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In this episode, I sit down with Dr. David Klurfeld—longtime USDA scientist and one of the few insiders to publicly challenge the WHO's classification of red meat as a carcinogen. We go deep into the flawed evidence behind the infamous 2015 IARC report, why nutritional epidemiology often fails to prove causality, and how a small group of researchers helped shape global policy with low-quality science. If you've ever felt confused about meat, saturated fat, or dietary guidelines, this conversation will help you think critically about what “counts” as evidence—and who gets to decide. We cover:Dr. Klurfeld's personal journey and lessons from a career in public healthWhy the 2015 IARC red meat classification was based on weak and inconsistent evidenceHow observational studies and “allegiance bias” mislead nutrition scienceThe politics of dietary guidelines and the role of the USDA and WHOWhat the media got wrong—and why red meat remains a nutrient-dense foodWhether you're a clinician, dietitian, or simply trying to make better nutrition decisions, this episode is a powerful reminder that bias, groupthink and weak data can distort science and mislead the public. We need to be discerning about the nutrition and health advice we follow. Who is Dr. David Klurfeld?Dr. David Klurfeld is a nutritional scientist and former National Program Leader for Human Nutrition at the USDA's Agricultural Research Service. He also served as Professor and Chair of Nutrition and Food Science at Wayne State University and Associate Editor of The American Journal of Clinical Nutrition. He has authored more than 200 scientific publications and was one of 22 experts invited to the 2015 IARC working group on red meat and cancer. He is a longtime advocate for scientific integrity in public health policy.This episode is brought to you by: LMNT- Free Sample Pack with any purchase, visit https://DrinkLMNT.com/DRLYONTimeline - Get 20% off your order of Mitopure - https://timeline.com/LYONMUDWTR - Use code DRLYON to get up to 43% off your starter kit - https://mudwtr.com/DRLYONNeeded - Use code DRLYON for 20% off your first order - https://thisisneeded.com Find Dr. David Klurfeld at: Indiana University Bloomington - https://publichealth.indiana.edu/about/directory/David-Klurfeld-dmklurfe.html Google Scholar - https://scholar.google.ca/citations?user=Ym5Og20AAAAJ&hl=en LinkedIn - https://www.linkedin.com/in/david-klurfeld-812845209/ Find me at:Instagram:@drgabriellelyon TikTok: @drgabriellelyonFacebook: facebook.com/doctorgabriellelyonYouTube:
The IARC Perspective on the Effects of Policies on Reducing Alcohol Consumption New England Journal of Medicine In 2020, alcohol use was responsible for over 740,000 new cancer cases worldwide. In response, The International Agency for Research on Cancer (IARC) released a two-part handbook assessing the effectiveness of public policy measures in reducing alcohol-related cancer risk. The report found that reducing or stopping alcohol consumption lowers the risk of certain cancers and that several policy interventions, such as increasing alcohol taxes; setting minimum pricing; restricting sales by time, place, and age; implementing total sales bans; and enacting strong marketing restrictions, effectively reduce alcohol consumption. Government-run alcohol monopolies and coordinated national strategies were also associated with decreased use. However, bans on alcohol discounts produced inconsistent results. These findings align with the WHO's Global Alcohol Action Plan and SAFER initiative, highlighting the importance of targeted, enforceable strategies to reduce alcohol-related harm globally. Read this issue of the ASAM Weekly Subscribe to the ASAM Weekly Visit ASAM
Ohje, wir haben leider schlechte Neuigkeiten für alle, die sich schon auf den ein oder anderen Aperol oder Radler diesen Sommer gefreut haben. In dieser Folge haben wir uns die Empfehlungen der #WHO und #DGE angeschaut und diese besagen „nur 0 Promille sind risikofrei“. Die Gesundheitsmythen, dass ein Gläschen Rotwein zum Beispiel sogar gut für das Herzkreislaufsystem seien, sind überholt. Ganz im Gegenteil - rund 200 Krankheiten inklusive 7 Krebserkrankungen stehen in direktem Zusammenhang mit Alkoholkonsum!! Eine enorme Belastung für das Gesundheitssystem, aber eben vor allem für die Gesundheit. Das hat auch der noch aktuelle Gesundheitsminister Kar Lauterbach zuletzt in einem Podcast berichtet. Aber der möchte sich das Weintrinken (zumindest vorerst) nicht abgewöhnen… Instagram: AMS_Podcast Email: aufmessersschneidepodcast@gmail.com Liken nicht vergessen! Am 17.04. gehts mit spannenden Themen weiter. Quellen: Relationship of Alcohol Consumption to All-Cause, Cardiovascular, and Cancer-Related Mortality in U.S. Adults https://pubmed.ncbi.nlm.nih.gov/28818200/ ESC 2016 Abstracts Heberg et al. Low to moderate alcohole consumption ist not associated with a reduction in cardiovascular events – The danish nurses' cohort study; Golan et al. The effect of moderate wine intake on carotid atherosclerosis in type 2 diabetes; a 2-jear intervention study Genuss mit Folgen Nur eine Mini-Alkoholdosis schützt das Herz https://link.springer.com/article/10.1007/s15034-017-1216-x?utm_source Statistik Alkoholkonsum in Dtl. BGM https://www.bundesgesundheitsministerium.de/service/begriffe-von-a-z/a/alkohol.html#:~:text=Durchschnittlich%20werden%20pro%20Kopf%20der,Tendenz%20im%20Alkoholkonsum%20zu%20registrieren. DGE Alkoholkonsum https://www.dge.de//fileadmin/Bilder/wissenschaft/referenzwerte/DGE-Position_Alkohol_EU_2024_10.pdf Alkoholkonsum Stiftung Gesundheitswissen https://www.stiftung-gesundheitswissen.de/alkohol/allgemeines https://pmc.ncbi.nlm.nih.gov/articles/PMC9677535/ Neudefinition von Alkohol WHO https://www.who.int/europe/de/news/item/02-10-2024-redefine-alcohol--who-s-urgent-call-for-europe-to-rethink-alcohol-s-place-in-society IARC Group 1 https://en.wikipedia.org/wiki/IARC_group_1 Direkte volkswirtschaftliche Kosten durch schädlichen Alkoholkonsum in Deutschland im Jahr 2022 https://de.statista.com/statistik/daten/studie/1458509/umfrage/direkte-volkswirtschaftliche-kosten-durch-schaedlichen-alkoholkonsum/ Behandlungsfälle Krankenhaus Alkohol https://de.statista.com/statistik/daten/studie/73745/umfrage/im-krankenhaus-behandelte-faelle-von-alkoholmissbrauch/ Alkohol führt zu vielen Gewalttaten https://www.aerzteblatt.de/archiv/alkoholbezogene-aggression-9444c5b4-1bae-4956-9cbe-fc3216d14b1b Umgang mit alkoholisierten Patienten https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-0031-1276795 Effect of alcohol consumption on diabetes mellitus: a systematic review https://pubmed.ncbi.nlm.nih.gov/14757619/ kognitive Reserve https://de.wikipedia.org/wiki/Kognitive_Reserve?utm_source= WHO Zu globalem Alkoholkonsum https://www.who.int/news-room/fact-sheets/detail/alcohol Resveratrol https://pmc.ncbi.nlm.nih.gov/articles/PMC6804046/ https://pmc-ncbi-nlm-nih-gov.translate.goog/articles/PMC2359620/?_x_tr_sl=en&_x_tr_tl=de&_x_tr_hl=de&_x_tr_pto=rq Suchtbeauftragte Landesärztekammer https://www.laekh.de/ueber-uns/ombudspersonen/drogen-und-suchtbeauftragte
Paulo é médico formado pela USP, onde se tornou professor titular de Patologia. Atuou como diretor do Instituto de Estudos Avançados da USP e integrou comitês da OMS e do IARC sobre qualidade do ar e câncer. Membro de diversas academias científicas, recebeu prêmios como a Medalha Anchieta e a Ordem do Mérito Científico. Além da ciência, é ciclista, gaitista e apaixonado por São Paulo.Apoie o Caos Planejado.Confira os links do episódio no site.Episódio produzido com o apoio da Ospa.
Send us a textToday's conversation is with climate specialist, Rick Thoman. Topics discussed include climate impacts on caribou herds of the Arctic, The Arctic Report Card 2024, Arctic ERMA, CAPRI, and the challenges Arctic communities face as marine traffic increases in the Arctic. Rick Thoman, a climate specialist at IARC's Alaska Center for Climate Assessment and Policy (ACCAP). Rick is a contributor and editor of the Arctic Report Card and was also awarded NOAA Distinguished Career Award for Professional Achievement in 2020. Rick was honored after a 30 plus year career with the National Weather Service for continued efforts to improve climate services in Alaska and for outstanding outreach efforts working with the Alaska Native community.The Arctic Report Card is an annual report led by the National Oceanic and Atmospheric Administration(NOAA). The efforts of scientists and climate specialists to create this robust scientific report every year is impressive. The amount of work contributed to this scientific document is extremely important in documenting climate change in the Arctic, which is warming at an alarming rate. The Report Card is intended for a wide audience, including scientists, teachers, students, decision-makers and the general public interested in the Arctic environment and science. It is encouraged that the Report Card to be utilized and studied, as the scientific community has created it to be an easily read report for the general population to better understand the complexities of the warming Arctic.Here are the links to the 2023 Arctic Report Card and NOAA website:https://arctic.noaa.gov/report-card/report-card-2023/The Arctic Report Card 2024 will be published on December 10th, 2024.https://www.arctic.noaa.govThanks for tuning into the Alaska Climate and Aviation Podcast!Katie WriterJournalist/Pilot/Photographerktphotowork@gmail.comSupport the showYou can visit my website for links to other episodes and see aerial photography of South Central Alaska at:https://www.katiewritergallery.com
If you've spent any time on TikTok or Instagram, there is no doubt you've heard about the “dangers of glyphosate”. This message has only increased since the introduction of MAHA and RFK Jr. A group of people who continuously spread misleading and false claims about nutrition, food science, vaccines, COVID-19, climate change, pharmaceutical industry, gun violence, and more. The MAHA group is convinced that glyphosate in our food is one of the leading causes of poor health outcomes in America. Meanwhile, there is a large body of research, including both human and animal subjects, showing no evidence of this risk. This group also forgets to address and acknowledge the social determinants of health and how oppressive systems impact a person's overall health, but that's for another post. Let's talk about the facts. Sources: Williams, G. M.; Kroes, R.; Munro, I. C. Safety evaluation and risk assessment of the herbicide Roundup and its active ingredient, glyphosate, for humans. Regul. Toxicol. Pharmacol. 2000, 31, 117-165. Stout, L.; Ruecker, F. Chronic study of glyphosate administered in feed to albino rats. Unpublished Report no. MSL-10495 R.D. 1014, 1990, submitted to U.S. Environmental Protection Agency by Monsanto Agricultural Company. Reregistration Eligibility Decision (RED) Glyphosate; EPA-738-F-93-011; U. S. Environmental Protection Agency, Office of Prevention, Pesticides, and Toxic Substances, Office of Pesticide Programs, U.S. Government Printing Office: Washington, DC, 1993. Atkinson, C.; Strutt, A.V.; Henderson, W.; Finch, J.; Hudson, P. Glyphosate: 104 week combined chronic feeding/oncogenicity study in rats with 52 week interim kill (results after 104 weeks). Unpublished report No. 7867, IRI project no. 438623, 1993, submitted to World Health Organization by Cheminova A/S, Lemvig, Denmark, prepared by Inveresk Research International, Tranent, Scotland. Pesticide Residues in Food - 2004: Toxicological evaluations; International Programme on Chemical Safety, World Health Organization: Geneva, Switzerland, 2004. Roberts, T. R. Metabolic Pathways of Agrochemicals-Part 1: Herbicides and Plant Growth Regulators; The Royal Society of Chemistry: Cambridge, UK, 1998; pp 396-399. Davoren M.J., Schiestl R.H. Glyphosate-based herbicides and cancer risk: A post-IARC decision review of potential mechanisms, policy and avenues of research. Carcinogenesis. 2018;39:1207–1215. Williams G.M., Kroes R., Munro I.C. Safety Evaluation and Risk Assessment of the Herbicide Roundup and Its Active Ingredient, Glyphosate, for Humans. Regul. Toxicol. Pharmacol. 2000;31:117–165. Benbrook C.M. Trends in glyphosate herbicide use in the United States and globally. Environ. Sci. Eur. 2016;28:1–15. Bai S.H., Ogbourne S.M. Glyphosate: Environmental contamination, toxicity and potential risks to human health via food contamination. Environ. Sci. Pollut. Res. 2016;23:18988–19001.
A bordo con le Donne al Volante, in compagnia di Liliana Russo e Katia De Rossi, è salito il direttore de Il Salvagente Riccardo Quintili per parlare di farine. Nell'ultima uscita del mensile è stata posta l'attenzione sulla presenza del glifosato, un insetticida cancerogeno per la IARC (agenzia internazionale per la ricerca sul cancro). «Questa sostanza è presente in 11 farine sulle 14 analizzate - esordisce Quintili -. Si pensava che il glifosato ci fosse solo in prodotti di questo tipo provenienti dall'estero, ma in realtà lo possiamo trovare anche in farine italiane, di marchi importanti». Il direttore ha sottolineato la differenza con la trasparenza che invece viene dedicata all'origine del grano, nelle confezioni della pasta: «Ci auguriamo che si possa essere più chiari in futuro. Agli ascoltatori do un consiglio: leggete l'etichetta delle farine o i dati del laboratorio analizzati da Il Salvagente».
Jacob och Erik diskuterar i det här avsnittet ett viralt inlägg på sociala medier där det påstås att det är bättre att ge barn sockersötad cola än lightvarianten. Argumentet vilar i princip i på en hänvisning till en äldre studier på ett sötningsmedel som inte ens finns i lightläsk tillsammans med ett försök i att ge den som lyssnar en osäkerhet kring hur säkra de gränsvärden som finns kring sötningsmedel idag faktiskt är. På Hälsoveckan by Tyngres instagram kan du hitta bilder relaterat till detta och tidigare avsnitt. Hålltider (00:00:00) Introsnack om levermat (00:03:25) Johannes Cullberg om att det är bäst att välja sockersötad läsk till barnen (00:05:36) När folk snackar allmänt och brett och ger referenser så ska referensen återspegla det (00:08:34) Sackarin är inte aspartam så det finns ingen poäng att länka studier om det (00:14:27) Påståendet om köpta forskare inom JEFCA (00:21:14) JEFCA tittar på risk för allt, IARC tittar på hazard för bara cancer (00:23:35) När blir socker i dryck verkligen helt säkert för vikten? (00:32:40) Alla som bara kopierar andrar på sociala medier (00:33:51) Människor som väljer att kopiera det andra gjort istället för att bara dela vidare det
Il Talco E' Cancerogeno? Le Cose Da Sapere!Ultimamente si sta parlando spesso del talco e dell'alta probabilità che sia cancerogeno per l'uomo. Scopriamo tutte le cose che forse non sai!#JohnsonAndJohnson #RisarcimentoMiliardario #DisputaLegale #Amianto #CancroOvarico #SicurezzaProdotti #IARC #ProdottiCosmetici #ConsapevolezzaConsumatori #SalutePubblica
OMS advierte sobre riesgo de talcoLa Agencia Internacional para la Investigación del Cáncer (IARC) de la OMS ha clasificado el talco como "probablemente cancerígeno" para los humanos. Esta advertencia llega tras analizar estudios que indican una posible relación entre el uso de talco y el cáncer de ovario. El talco es común en productos como polvos de bebé y cosméticos. Aunque la evidencia en humanos es limitada, las pruebas en animales han mostrado resultados preocupantes. La IARC recomienda cautela en el uso de productos que contienen talco, especialmente en áreas sensibles del cuerpo.Nuevas preocupaciones por el uso del talcoEl talco es un mineral natural que se encuentra en muchos productos de cuidado personal. Desde hace décadas, ha sido utilizado en polvos de talco para bebés y en cosméticos debido a sus propiedades absorbentes y suavizantes. La preocupación principal surge del hecho de que el talco puede estar contaminado con asbesto, un conocido cancerígeno. Los estudios recientes de la IARC se han centrado en evaluar el riesgo potencial del talco en el desarrollo de cáncer de ovario. Los resultados han llevado a la OMS a emitir una advertencia sobre su uso.La controversia sobre el talco radica en su posible vinculación con el cáncer de ovario. Las investigaciones han sugerido que las partículas de talco podrían viajar a través del sistema reproductivo femenino, causando inflamación y potencialmente contribuyendo al desarrollo de tumores cancerígenos. Esta hipótesis se basa en estudios observacionales que han mostrado un aumento en la incidencia de cáncer de ovario en mujeres que han usado talco regularmente en sus áreas genitales. La falta de conclusividad en los estudios humanos y la presencia de posibles contaminantes como el asbesto complican la evaluación del riesgo real.El caso más destacado relacionado con el uso de talco es el de Johnson & Johnson, que enfrentó múltiples demandas por sus productos de talco para bebés. La compañía fue acusada de no advertir a los consumidores sobre los riesgos potenciales del talco contaminado con asbesto. En 2020, Johnson & Johnson dejó de vender sus polvos de talco en América del Norte y acordó pagar 700 millones de dólares en un acuerdo sin admitir culpabilidad. Este caso resuena con otros litigios donde se ha cuestionado la seguridad de productos de consumo masivo, subrayando la necesidad de una regulación más estricta.Explicativo de incidentes relacionados: El talco ha estado bajo la lupa de investigadores y reguladores debido a varios incidentes relacionados. En estudios con animales, la exposición al talco ha mostrado un aumento en la incidencia de cáncer en los pulmones y las glándulas suprarrenales. Además, los trabajadores en la industria de la minería y procesamiento de talco están en mayor riesgo de exposición a contaminantes peligrosos como el asbesto. Estos trabajadores han presentado tasas más altas de enfermedades respiratorias y cáncer, lo que subraya la necesidad de controles más estrictos en la industria del talco.
La Agencia Internacional para la Investigación del Cáncer (IARC), la agencia contra el cáncer de la Organización Mundial de la Salud (OMS), ha evaluado la carcinogenicidad del TALCO (Silicato de magnesio monohidratado (CAS 14807-96-6)) y el acrilonitrilo. El resultado de la evaluación se ha publicado en un artículo resumido en “The Lancet Oncology” y se describirá en detalle en el Volumen 136 de las Monografías de la IARC, que se publicará en 2025. TALCO: El talco, un mineral natural, se extrae en muchas regiones del mundo. La exposición al talco ocurre en entornos ocupacionales durante la extracción, molienda o procesamiento de talco, o durante la producción de productos que contienen talco. La exposición de la población general a través del uso de cosméticos y polvos corporales que contienen talco está mejor documentada; sin embargo, la exposición a través de alimentos, medicamentos y otros productos de consumo es probable, aunque menos documentado. Debido a los desafíos que plantea una medición precisa, la contaminación del talco con asbesto puede seguir siendo una preocupación y puede dar lugar a la exposición de los trabajadores y de la población en general al amianto (por ejemplo, a través de maquillajes y polvos corporales contaminados a base de talco). RESULTADOS DE LA EVALUACIÓN DEL TALCO: Después de revisar exhaustivamente la literatura científica disponible, el grupo de trabajo de 29 expertos internacionales clasificó al talco como probablemente cancerígeno para los humanos (Grupo 2A) sobre la base de una combinación de evidencia limitada de cáncer en humanos ( cáncer de ovario), evidencia suficiente de cáncer en animales de experimentación y evidencia mecanicista sólida de que el talco exhibe características clave de carcinógeno en células primarias humanas y sistemas experimentales. DETERMINACIONES DE SOLIDEZ DE LA EVIDENCIA PARA EL TALCO: La clasificación del Grupo 2A es el segundo nivel más alto de certeza de que una sustancia puede causar cáncer. Hubo numerosos estudios que mostraron consistentemente un aumento en la incidencia de cáncer de ovario en humanos que informaron el uso de talcos corporales en la región perineal. Aunque la evaluación se centró en talco que no contenía amianto, en la mayoría de los estudios realizados en seres humanos expuestos no se pudo excluir la contaminación del talco con amianto. Además, no se pudieron descartar con una confianza razonable los sesgos en la forma en que se informó el uso de talco en los estudios epidemiológicos. Como resultado, no se pudo establecer completamente el papel causal del talco. También se observó una mayor tasa de cáncer de ovario en estudios que analizaban la exposición ocupacional de mujeres expuestas al talco en la industria de la pulpa y el papel. Sin embargo, no se pudo excluir la confusión por la exposición simultánea al asbesto, y el aumento de la tasa se basó en un pequeño número de cánceres de ovario en esos estudios ocupacionales. En animales de experimentación, el tratamiento con talco provocó un aumento de la incidencia de neoplasias malignas en las hembras (médula suprarrenal y pulmón) y una combinación de neoplasias benignas y malignas en los machos (médula suprarrenal) de una sola especie (rata).
The most enthralling conversation I've ever had with anyone on cancer. It's with Charlie Swanton who is a senior group leader at the Francis Crick Institute, the Royal Society Napier Professor in Cancer and medical oncologist at University College London, co-director of Cancer Research UK.Video snippet from our conversation. Full videos of all Ground Truths podcasts can be seen on YouTube here. The audios are also available on Apple and Spotify.Transcript with audio links and many external linksEric Topol (00:07):Well, hello, this is Eric Topol with Ground Truths, and I am really fortunate today to connect us with Charlie Swanton, who is if not the most prolific researcher in the space of oncology and medicine, and he's right up there. Charlie is a physician scientist who is an oncologist at Francis Crick and he heads up the lung cancer area there. So Charlie, welcome.Charles Swanton (00:40):Thank you, Eric. Nice to meet you.Learning from a FailureEric Topol (00:43):Well, it really is a treat because I've been reading your papers and they're diverse. They're not just on cancer. Could be connecting things like air pollution, it could be Covid, it could be AI, all sorts of things. And it's really quite extraordinary. So I thought I'd start out with a really interesting short paper you wrote towards the end of last year to give a sense about you. It was called Turning a failing PhD around. And that's good because it's kind of historical anchoring. Before we get into some of your latest contributions, maybe can you tell us about that story about what you went through with your PhD?Charles Swanton (01:26):Yeah, well thank you, Eric. I got into research quite early. I did what you in the US would call the MD PhD program. So in my twenties I started a PhD in a molecular biology lab at what was then called the Imperial Cancer Research Fund, which was the sort of the mecca for DNA tumor viruses, if you like. It was really the place to go if you wanted to study how DNA tumor viruses worked, and many of the components of the cell cycle were discovered there in the 80s and 90s. Of course, Paul Nurse was the director of the institute at the time who discovered cdc2, the archetypal regulator of the cell cycle that led to his Nobel Prize. So it was a very exciting place to work, but my PhD wasn't going terribly well. And sort of 18, 19 months into my PhD, I was summoned for my midterm reports and it was not materializing rapidly enough.(02:25):And I sat down with my graduate student supervisors who were very kind, very generous, but basically said, Charlie, this isn't going well, is it? You've got two choices. You can either go back to medical school or change PhD projects. What do you want to do? And I said, well, I can't go back to medical school because I'm now two years behind. So instead I think what I'll do is I'll change PhD projects. And they asked me what I'd like to do. And back then we didn't know how p21, the CDK inhibitor bound to cyclin D, and I said, that's what I want to understand how these proteins interact biochemically. And they said, how are you going to do that? And I said, I'm not too sure, but maybe we'll try yeast two-hybrid screen and a mutagenesis screen. And that didn't work either. And in the end, something remarkable happened.(03:14):My PhD boss, Nic Jones, who's a great guy, still is, retired though now, but a phenomenal scientist. He put me in touch with a colleague who actually works next door to me now at the Francis Crick Institute called Neil McDonald, a structural biologist. And they had just solved, well, the community had just solved the structure. Pavletich just solved the structure of cyclin A CDK2. And so, Neil could show me this beautiful image of the crystal structure in 3D of cyclin A, and we could mirror cyclin D onto it and find the surface residue. So I spent the whole of my summer holiday mutating every surface exposed acid on cyclin D to an alanine until I found one that failed to interact with p21, but could still bind the CDK. And that little breakthrough, very little breakthrough led to this discovery that I had where the viral cyclins encoded by Kaposi sarcoma herpes virus, very similar to cyclin D, except in this one region that I had found interactive with a CDK inhibitor protein p21.(04:17):And so, I asked my boss, what do you think about the possibility this cyclin could have evolved from cyclin D but now mutated its surface residues in a specific area so that it can't be inhibited by any of the control proteins in the mammalian cell cycle? He said, it's a great idea, Charlie, give it a shot. And it worked. And then six months later, we got a Nature paper. And that for me was like, I cannot tell you how exciting, not the Nature paper so much as the discovery that you were the first person in the world to ever see this beautiful aspect of evolutionary biology at play and how this cyclin had adapted to just drive the cell cycle without being inhibited. For me, just, I mean, it was like a dream come true, and I never experienced anything like it before, and I guess it's sizes the equivalent to me of a class A drug. You get such a buzz out of it and over the years you sort of long for that to happen again. And occasionally it does, and it's just a wonderful profession.Eric Topol (05:20):Well, I thought that it was such a great story because here you were about to fail. I mean literally fail, and you really were able to turn it around and it should give hope to everybody working in science out there that they could just be right around the corner from a significant discovery.Charles Swanton (05:36):I think what doesn't break you makes you stronger. You just got to plow on if you love it enough, you'll find a way forward eventually, I hope.Tracing the Evolution of Cancer (TRACERx)Eric Topol (05:44):Yeah, no question about that. Now, some of your recent contributions, I mean, it's just amazing to me. I just try to keep up with the literature just keeping up with you.Charles Swanton (05:58):Eric, it's sweet of you. The first thing to say is it's not just me. This is a big community of lung cancer researchers we have thanks to Cancer Research UK funded around TRACERx and the lung cancer center. Every one of my papers has three corresponding authors, multiple co-first authors that all contribute in this multidisciplinary team to the sort of series of small incremental discoveries. And it's absolutely not just me. I've got an amazing team of scientists who I work with and learn from, so it's sweet to give me the credit.Eric Topol (06:30):I think what you're saying is really important. It is a team, but I think what I see through it all is that you're an inspiration to the team. You pull people together from all over the world on these projects and it's pretty extraordinary, so that's what I would say.Charles Swanton (06:49):The lung community, Eric, the lung cancer community is just unbelievably conducive to collaboration and advancing understanding of the disease together. It's just such a privilege to be working in this field. I know that sounds terribly corny, but it is true. I don't think I recall a single email to anybody where I've asked if we can collaborate where they've said, no, everybody wants to help. Everybody wants to work together on this challenge. It's just such an amazing field to be working in.Eric Topol (07:19):Yeah. Well I was going to ask you about that. And of course you could have restricted your efforts or focused on different cancers. What made you land in lung cancer? Not that that's only part of what you're working on, but that being the main thing, what drew you to that area?Charles Swanton (07:39):So I think the answer to your question is back in 2008 when I was looking for a niche, back then it was lung cancer was just on the brink of becoming an exciting place to work, but back then nobody wanted to work in that field. So there was a chair position in thoracic oncology and precision medicine open at University College London Hospital that had been open, as I understand it for two years. And I don't think anybody had applied. So I applied and because I was the only one, I got it and the rest is history.(08:16):And of course that was right at the time when the IPASS draft from Tony Mok was published and was just a bit after when the poster child of EGFR TKIs and EGFR mutant lung cancer had finally proven that if you segregate that population of patients with EGFR activating mutation, they do incredibly well on an EGFR inhibitor. And that was sort of the solid tumor poster child along with Herceptin of precision medicine, I think. And you saw the data at ASCO this week of Lorlatinib in re-arranged lung cancer. Patients are living way beyond five years now, and people are actually talking about this disease being more like CML. I mean, it's extraordinary the progress that's been made in the last two decades in my short career.Eric Topol (09:02):Actually, I do want to have you put that in perspective because it's really important what you just mentioned. I was going to ask you about this ASCO study with the AKT subgroup. So the cancer landscape of the lung has changed so much from what used to be a disease of cigarette smoking to now one of, I guess adenocarcinoma, non-small cell carcinoma, not related to cigarettes. We're going to talk about air pollution in a minute. This group that had, as you say, 60 month, five year plus survival versus what the standard therapy was a year plus is so extraordinary. But is that just a small subgroup within small cell lung cancer?Charles Swanton (09:48):Yes, it is, unfortunately. It's just a small subgroup. In our practice, probably less than 1% of all presentations often in never smokers, often in female, never smokers. So it is still in the UK at least a minority subset of adenocarcinomas, but it's still, as you rightly say, a minority of patients that we can make a big difference to with a drug that's pretty well tolerated, crosses the blood-brain barrier and prevents central nervous system relapse and progression. It really is an extraordinary breakthrough, I think. But that said, we're also seeing advances in smoking associated lung cancer with a high mutational burden with checkpoint inhibitor therapy, particularly in the neoadjuvant setting now prior to surgery. That's really, really impressive indeed. And adjuvant checkpoint inhibitor therapies as well as in the metastatic setting are absolutely improving survival times and outcomes now in a way that we couldn't have dreamt of 15 years ago. We've got much more than just platinum-based chemo is basically the bottom line now.Revving Up ImmunotherapyEric Topol (10:56):Right, right. Well that actually gets a natural question about immunotherapy also is one of the moving parts actually just amazing to me how that's really, it's almost like we're just scratching the surface of immunotherapy now with checkpoint inhibitors because the more we get the immune system revved up, the more we're seeing results, whether it's with vaccines or CAR-T, I mean it seems like we're just at the early stages of getting the immune system where it needs to be to tackle the cancer. What's your thought about that?Charles Swanton (11:32):I think you're absolutely right. We are, we're at the beginning of a very long journey thanks to Jim Allison and Honjo. We've got CTLA4 and PD-1/PDL-1 axis to target that's made a dramatic difference across multiple solid tumor types including melanoma and lung cancer. But undoubtedly, there are other targets we've seen LAG-3 and melanoma and then we're seeing new ways, as you rightly put it to mobilize the immune system to target cancers. And that can be done through vaccine based approaches where you stimulate the immune system against the patient's specific mutations in their cancer or adoptive T-cell therapies where you take the T-cells out of the tumor, you prime them against the mutations found in the tumor, you expand them and then give them back to the patient. And colleagues in the US, Steve Rosenberg and John Haanen in the Netherlands have done a remarkable job there in the context of melanoma, we're not a million miles away from European approvals and academic initiated manufacturing of T-cells for patients in national health systems like in the Netherlands.(12:50):John Haanen's work is remarkable in that regard. And then there are really spectacular ways of altering T-cells to be able to either migrate to the tumor or to target specific tumor antigens. You mentioned CAR-T cell therapies in the context of acute leukemia, really extraordinary developments there. And myeloma and diffuse large B-cell lymphoma as well as even in solid tumors are showing efficacy. And I really am very excited about the future of what we call biological therapies, be it vaccines, an antibody drug conjugates and T-cell therapies. I think cancer is a constantly adapting evolutionary force to be reckoned with what better system to combat it than our evolving immune system. It strikes me as being a future solution to many of these refractory cancers we still find difficult to treat.Eric Topol (13:48):Yeah, your point is an interesting parallel how the SARS-CoV-2 virus is constantly mutating and becoming more evasive as is the tumor in a person and the fact that we can try to amp up the immune system with these various means that you just were reviewing. You mentioned the other category that's very hot right now, which is the antibody drug conjugates. Could you explain a bit about how they work and why you think this is an important part of the future for cancer?Antibody-Drug ConjugatesCharles Swanton (14:26):That's a great question. So one of the challenges with chemotherapy, as you know, is the normal tissue toxicity. So for instance, neutropenia, hair loss, bowel dysfunction, diarrhea, epithelial damage, essentially as you know, cytotoxics affect rapidly dividing tissues, so bone marrow, epithelial tissues. And because until relatively recently we had no way of targeting chemotherapy patients experienced side effects associated with them. So over the last decade or so, pioneers in this field have brought together this idea of biological therapies linked with chemotherapy through a biological linker. And so one poster chart of that would be the drug T-DXd, which is essentially Herceptin linked to a chemotherapy drug. And this is just the most extraordinary drug that obviously binds the HER2 receptor, but brings the chemotherapy and proximity of the tumor. The idea being the more drug you can get into the tumor and the less you're releasing into normal tissue, the more on tumor cytotoxicity you'll have and the less off tumor on target normal tissue side effects you'll have. And to a large extent, that's being shown to be the case. That doesn't mean they're completely toxicity free, they're not. And one of the side effects associated with these drugs is pneumonitis.(16:03):But that said, the efficacy is simply extraordinary. And for example, we're having to rewrite the rule books if you like, I think. I mean I'm not a breast cancer physician, I used to be a long time ago, but back in the past in the early 2000s, there was HER2 positive breast cancer and that's it. Now they're talking about HER2 low, HER2 ultra-low, all of which seem to in their own way be sensitive to T-DXd, albeit to a lower extent than HER2 positive disease. But the point is that there doesn't seem to be HER2 completely zero tumor group in breast cancer. And even the HER2-0 seem to benefit from T-DXd to an extent. And the question is why? And I think what people are thinking now is it's a combination of very low cell service expression of HER2 that's undetectable by conventional methods like immunohistochemistry, but also something exquisitely specific about the way in which HER2 is mobilized on the membrane and taken back into the cell. That seems to be specific to the breast cancer cell but not normal tissue. So in other words, the antibody drug conjugate binds the tumor cell, it's thought the whole receptor's internalized into the endosome, and that's where the toxicity then happens. And it's something to do with the endosomal trafficking with the low level expression and internalization of the receptor. That may well be the reason why these HER2 low tumors are so sensitive to this beautiful technology.Eric Topol (17:38):Now I mean it is an amazing technology in all these years where we just were basically indiscriminately trying to kill cells and hoping that the cancer would succumb. And now you're finding whether you want to call it a carry or vector or Trojan horse, whatever you want to call it, but do you see that analogy of the HER2 receptor that's going to be seen across the board in other cancers?Charles Swanton (18:02):That's the big question, Eric. I think, and have we just lucked out with T-DXd, will we find other T-DXd like ADCs targeting other proteins? I mean there are a lot of ADCs being developed against a lot of different cell surface proteins, and I think the jury's still out. I'm confident we will, but we have to bear in mind that biology is a fickle friend and there may be something here related to the internalization of the receptor in breast cancer that makes this disease so exquisitely sensitive. So I think we just don't know yet. I'm reasonably confident that we will find other targets that are as profoundly sensitive as HER2 positive breast cancer, but time will tell.Cancer, A Systemic DiseaseEric Topol (18:49):Right. Now along these lines, well the recent paper that you had in Cell, called embracing cancer complexity, which we've talking about a bit, in fact it's kind of those two words go together awfully well, but hallmarks of systemic disease, this was a masterful review, as you say with the team that you led. But can you tell us about what's your main perspective about this systemic disease? I mean obviously there's been the cancer is like cardiovascular and cancers like this or that, but here you really brought it together with systemic illness. What can you say about that?Charles Swanton (19:42):Well, thanks for the question first of all, Eric. So a lot of this comes from some of my medical experience of treating cancer and thinking to myself over the years, molecular biology has had a major footprint on advances in treating the disease undoubtedly. But there are still aspects of medicine where molecular biology has had very little impact, and often that is in areas of suffering in patients with advanced disease and cancer related to things like cancer cachexia, thrombophilia. What is the reason why patients die blood clots? What is the reason patients die of cancer at all? Even a simple question like that, we don't always know the answer to, on death certificates, we write metastatic disease as a cause of cancer death, but we have patients who die with often limited disease burden and no obvious proximal cause of death sometimes. And that's very perplexing, and we need to understand that process better.(20:41):And we need to understand aspects like cancer pain, for example, circadian rhythms affect biological sensitivity of cancer cells to drugs and what have you. Thinking about cancer rather than just sort of a single group of chaotically proliferating cells to a vision of cancer interacting both locally within a microenvironment but more distantly across organs and how organs communicate with the cancer through neuronal networks, for example, I think is going to be the next big challenge by setting the field over the next decade or two. And I think then thinking about more broadly what I mean by embracing complexity, I think some of that relates to the limitations of the model systems we use, trying to understand inter-organ crosstalk, some of the things you cover in your beautiful Twitter reviews. (←Ground Truths link) I remember recently you highlighted four publications that looked at central nervous system, immune cell crosstalk or central nervous system microbiome crosstalk. It's this sort of long range interaction between organs, between the central nervous system and the immune system and the cancer that I'm hugely interested in because I really think there are vital clues there that will unlock new targets that will enable us to control cancers more effectively if we just understood these complex networks better and had more sophisticated animal model systems to be able to interpret these interactions.Eric Topol (22:11):No, it's so important what you're bringing out, the mysteries that still we have to deal with cancer, why patients have all these issues or dying without really knowing what's happened no less, as you say, these new connects that are being discovered at a remarkable pace, as you mentioned, that ground truths. And also, for example, when I spoke with Michelle Monje, she's amazing on the cancer, where hijacking the brain cells and just pretty extraordinary things. Now that gets me to another line of work of yours. I mean there are many, but the issue of evolution of the tumor, and if you could put that in context, a hot area that's helping us elucidate these mechanisms is known as spatial omics or spatial biology. This whole idea of being able to get the spatial temporal progression through single cell sequencing and single cell nuclei, all the single cell omics. So if you could kind of take us through what have we learned with this technique and spatial omics that now has changed or illuminated our understanding of how cancer evolves?Charles Swanton (23:37):Yeah, great question. Well, I mean I think it helps us sort of rewind a bit and think about evolution in general. Genetic selection brought about by diverse environments and environmental pressures that force evolution, genetic evolution, and speciation down certain evolutionary roots. And I think one can think about cancers in a similar way. They start from a single cell and we can trace the evolutionary paths of cancers by single cell analysis as well as bulk sequencing of spatially separated tumor regions to be able to reconstruct their subclones. And that's taught us to some extent, what are the early events in tumor evolution? What are the biological mechanisms driving branched evolution? How does genome instability begin in tumors? And we found through TRACERx work, whole genome doubling is a major route through to driving chromosome instability along with mutagenic enzymes like APOBEC that drive both mutations and chromosomal instability.(24:44):And then that leads to a sort of adaptive radiation in a sense, not dissimilar to I guess the Cambrian explosion of evolutionary opportunity upon which natural selection can act. And that's when you start to see the hallmarks of immune evasion like loss of HLA, the immune recognition molecules that bind the neoantigens or even loss of the neoantigens altogether or mutation of beta 2 microglobulin that allow the tumor cells to now evolve below the radar, so to speak. But you allude to the sort of spatial technologies that allow us to start to interpret the microenvironments as well. And that then tells us what the evolutionary pressures are upon the tumor. And we're learning from those spatial technologies that these environments are incredibly diverse, actually interestingly seem to be converging on one important aspect I'd like to talk to you a little bit more about, which is the myeloid axis, which is these neutrophils, macrophages, et cetera, that seem to be associated with poor outcome and that will perhaps talk about pollution in a minute.(25:51):But I think they're creating a sort of chronic inflammatory response that allows these early nascent tumor cells to start to initiate into frankly tumor invasive cells and start to grow. And so, what we're seeing from these spatial technologies in lung cancer is that T-cells, predatory T-cells, force tumors to lose their HLA molecules and what have you to evade the immune system. But for reasons we don't understand, high neutrophil infiltration seems to be associated with poor outcome, poor metastasis free survival. And actually, those same neutrophils we've recently found actually even tracked to the metastasis sites of metastasis. So it's almost like this sort of symbiosis between the myeloid cells and the tumor cells in their biology and growth and progression of the tumor cells.Eric Topol (26:46):Yeah, I mean this white cell story, this seems to be getting legs and is relatively new, was this cracked because of the ability to do this type of work to in the past everything was, oh, it's cancer's heterogeneous and now we're getting pinpoint definition of what's going on.Charles Swanton (27:04):I think it's certainly contributed, but it's like everything in science, Eric, when you look back, there's evidence in the literature for pretty much everything we've ever discovered. You just need to put the pieces together. And I mean one example would be the neutrophil lymphocyte ratio in the blood as a hallmark of outcome in cancers and to checkpoint inhibitor blockade, maybe this begins to explain it, high neutrophils, immune suppressive environment, high neutrophils, high macrophages, high immune suppression, less benefit from checkpoint inhibitor therapy, whereas you want lymphocyte. So I think there are biomedical medical insights that help inform the biology we do in the lab that have been known for decades or more. And certainly the myeloid M2 axis in macrophages and what have you was known about way before these spatial technologies really came to fruition, I think.The Impact of Air PollutionEric Topol (28:01):Yeah. Well you touched on this about air pollution and that's another dimension of the work that you and your team have done. As you well know, there was a recent global burden of disease paper in the Lancet, which has now said that air pollution with particulate matter 2.5 less is the leading cause of the burden of disease in the world now.Charles Swanton (28:32):What did you think of that, Eric?Eric Topol (28:34):I mean, I was blown away. Totally blown away. And this is an era you've really worked on. So can you put it in perspective?Charles Swanton (28:42):Yeah. So we got into this because patients of mine, and many of my colleagues would ask the same question, I've never smoked doctor, I'm healthy. I'm in my mid 50s though they're often female and I've got lung cancer. Why is that doctor? I've had a good diet, I exercise, et cetera. And we didn't really have a very good answer for that, and I don't want to pretend for a minute we solved the whole problem. I think hopefully we've contributed to a little bit of understanding of why this may happen. But that aside, we knew that there were risk factors associated with lung cancer that included air pollution, radon exposure, of course, germline genetics, we mustn't forget very important germline variation. And I think there is evidence that all of them are associated with lung cancer risk in different ways. But we wanted to look at air pollution, particularly because there was an awful lot of evidence, several meta-analysis of over half a million individuals showing very convincingly with highly significant results that increasing PM 2.5 micron particulate levels were associated with increased risk of lung cancer.(29:59):To put that into perspective, where you are on the west coast of the US, it's relatively unpolluted. You would be talking about maybe five micrograms per meter cubed of PM2.5 in a place like San Diego or Western California, assuming there aren't any forest fires of course. And we estimate that that would translate to about, we think it's about one extra case of never smoking lung cancer per hundred thousand of the population per year per one microgram per meter cube rise in the pollution levels. So if you go to Beijing for example, on a bad day, the air pollution levels could be upwards of a hundred micrograms per meter cubed because there are so many coal fired power stations in China partly. And there I think the risk is considerably higher. And that's certainly what we've seen in the meta-analyses in our limited and relatively crude epidemiological analyses to be the case.(30:59):So I think the association was pretty certain, we were very confident from people's prior publications this was important. But of course, association is not causation. So we took a number of animal models and showed that you could promote lung cancer formation in four different oncogene driven lung cancer models. And then the question is how, does air pollution stimulate mutations, which is what I initially thought it would do or something else. It turns out we don't see a significant increase in exogenous like C to A carcinogenic mutations. So that made us put our thinking caps on. And I said to you earlier, often all these discoveries have been made before. Well, Berenblum in 1947, first postulated that actually tumors are initiated through a two-step process, which we now know involves a sort of pre initiated cell with a mutation in that in itself is not sufficient to cause cancer.(31:58):But on top of that you need an inflammatory stimulus. So the question was then, well, okay, is inflammation working here? And we found that there was an interleukin-1 beta axis. And what happens is that the macrophages come into the lung on pollution exposure, engulf phagocytose the air pollutants, and we think what's happening is the air pollutants are puncturing membranes in the lung. That's what we think is happening. And interleukin-1 beta preformed IL-1 beta is being released into the extracellular matrix and then stimulating pre-initiated cells stem cells like the AT2 cells with an activating EGFR mutation to form a tumor. But the EGFR mutation alone is not sufficient to form tumors. It's only when you have the interleukin-1 beta and the activated mutation that a tumor can start.(32:49):And we found that if we sequence normal lung tissue in a healthy adult 60-year-old adult, we will find about half of biopsies will have an activating KRAS mutation in normal tissue, and about 15% will have an activating mutation in EGFR in histologically normal tissue with nerve and of cancer. In fact, my friend and colleague who's a co-author on the paper, James DeGregori, who you should speak to in Colorado, fascinating evolutionary cancer biologists estimates that in a healthy 60-year-old, there are a hundred billion cells in your body that harbor an oncogenic mutation. So that tells you that at the cellular level, cancer is an incredibly rare event and almost never happens. I mean, our lifetime risk of cancer is perhaps one in two. You covered that beautiful pancreas paper recently where they estimated that there may be 80 to 100 KRAS mutations in a normal adult pancreas, and yet our lifetime risk of pancreas cancer is one in 70. So this tells you that oncogenic mutations are rarely sufficient to drive cancer, so something else must be happening. And in the context of air pollution associated lung cancer, we think that's inflammation driven by these white cells, these myeloid cells, the macrophages.Cancer BiomarkersEric Topol (34:06):No, it makes a lot of sense. And this, you mentioned the pancreas paper and also what's going in the lung, and it seems like we have this burden of all you need is a tipping point and air pollution seems to qualify, and you seem to be really in the process of icing the mechanism. And like I would've thought it was just mutagenic and it's not so simple, right? But that gets me to this is such an important aspect of cancer, the fact that we harbor these kind of preconditions. And would you think that cancer takes decades to actually manifest most cancers, or do we really have an opportunity here to be able to track whether it's through blood or other biomarkers? Another area you've worked on a lot whereby let's say you could define people at risk for polygenic risk scores or various cancers or genome sequencing for predisposition genes, whatever, and you could monitor in the future over the course of those high-risk people, whether they were starting to manifest microscopic malignancy. Do you have any thoughts about how long it takes for the average person to actually manifest a typical cancer?Charles Swanton (35:28):That's a cracking question, and the answer is we've got some clues in various cancers. Peter Campbell would be a good person to speak to. He estimates that some of the earliest steps in renal cancer can occur in adolescence. We've had patients who gave up smoking 30 or so years ago where we can still see the clonal smoking mutations in the trunk of the tumor's evolutionary tree. So the initial footprints of the cancer are made 30 years before the cancer presents. That driver mutation itself may also be a KRAS mutation in a smoking cigarette context, G12C mutation. And those mutations can precede the diagnosis of the disease by decades. So the earliest steps in cancer evolution can occur, we think can precede diagnoses by a long time. So to your point, your question which is, is there an opportunity to intervene? I'm hugely optimistic about this actually, this idea of molecular cancer prevention.An Anti-Inflammatory Drug Reduces Fatal Cancer and Lung Cancer(36:41):How can we use data coming out of various studies in the pancreas, mesothelioma, lung, et cetera to understand the inflammatory responses? I don't think we can do very much about the mutations. The mutations unfortunately are a natural consequence of aging. You and I just sitting here talking for an hour will have accumulated multiple mutations in our bodies over that period, I'm afraid and there's no escaping it. And right now there's not much we can do to eradicate those mutant clones. So if we take that as almost an intractable problem, measuring them is hard enough, eradicating them is even harder. And then we go back to Berenblum in 1947 who said, you need an inflammatory stimulus. Well, could we do something about the inflammation and dampen down the inflammation? And of course, this is why we got so excited about IL-1 beta because of the CANTOS trial, which you may remember in 2017 from Ridker and colleagues showed that anti IL-1 beta used as a mechanism of preventing cardiovascular events was associated with a really impressive dose dependent reduction in new lung cancer primaries.(37:49):Really a beautiful example of cancer prevention in action. And that data weren't just a coincidence. The FDA mandated Novartis to collect the solid tumor data and the P-values are 0.001. I mean it's very highly significant dose dependent reduction in lung cancer incidents associated with anti IL-1 beta. So I think that's really the first clue in my mind that something can be done about this problem. And actually they had five years of follow-up, Eric. So that's something about that intervening period where you can treat and then over time see a reduction in new lung cancers forming. So I definitely think there's a window of opportunity here.Eric Topol (38:31):Well, what you're bringing up is fascinating here because this trial, which was a cardiology trial to try to reduce heart attacks, finds a reduction in cancer, and it's been lost. It's been buried. I mean, no one's using this therapy to prevent cancer between ratcheting up the immune system or decreasing inflammation. We have opportunities that we're not even attempting. Are there any trials that are trying to do this sort of thing?Charles Swanton (39:02):So this is the fundamental problem. Nobody wants to invest in prevention because essentially you are dealing with well individuals. It's like the vaccine challenge all over again. And the problem is you never know who you are benefiting. There's no economic model for it. So pharma just won't touch prevention with a barge pole right now. And that's the problem. There's no economic model for it. And yet the community, all my academic colleagues are crying out saying, this has got to be possible. This has got to be possible. So CRUK are putting together a group of like-minded individuals to see if we can do something here and we're gradually making progress, but it is tough.Eric Topol (39:43):And it's interesting that you bring that up because for GRAIL, one of the multicenter cancer early detection companies, they raised billions of dollars. And in fact, their largest trial is ongoing in the UK, but they haven't really focused on high-risk people. They just took anybody over age 50 or that sort of thing. But that's the only foray to try to reboot how we or make an early microscopic diagnosis of cancer and track people differently. And there's an opportunity there. You've written quite a bit on you and colleagues of the blood markers being able to find a cancer where well before, in fact, I was going to ask you about that is, do you think there's people that are not just having all these mutations every minute, every hour, but that are starting to have the early seeds of cancer, but because their immune system then subsequently kicks in that they basically kind of quash it for that period of time?Charles Swanton (40:47):Yeah, I do think that, I mean, the very fact that we see these sort of footprints in the tumor genome of immune evasion tells you that the immune system's having a very profound predatory effect on evolving tumors. So I do think it's very likely that there are tumors occurring that are suppressed by the immune system. There is a clear signature, a signal of negative selection in tumors where clones have been purified during their evolution by the immune system. So I think there's pretty strong evidence for that now. Obviously, it's very difficult to prove something existed when it doesn't now exist, but there absolutely is evidence for that. I think it raises the interesting question of immune system recognizes mutations and our bodies are replete with mutations as we were just discussing. Why is it that we're not just a sort of epithelial lining of autoimmunity with T-cells and immune cells everywhere? And I think what the clever thing about the immune system is it's evolved to target antigens only when they get above a certain burden. Otherwise, I think our epithelial lining, our skin, our guts, all of our tissues will be just full of T-cells eating away our normal clones.(42:09):These have to get to a certain size for antigen to be presented at a certain level for the immune system to recognize it. And it's only then that you get the immune predation occurring.Forever Chemicals and Microplastics Eric Topol (42:20):Yeah, well, I mean this is opportunities galore here. I also wanted to extend the air pollution story a bit. Obviously, we talked about particulate matter and there's ozone and nitric NO2, and there's all sorts of other air pollutants, but then there's also in the air and water these forever chemicals PFAS for abbreviation, and they seem to be incriminated like air pollution. Can you comment about that?Charles Swanton (42:55):Well, I can comment only insofar as to say I'm worried about the situation. Indeed, I'm worried about microplastics actually, and you actually cover that story as well in the New England Journal, the association of microplastics with plaque rupture and atheroma. And indeed, just as in parenthesis, I wanted to just quickly say we currently think the same mechanisms that are driving lung cancer are probably responsible for atheroma and possibly even neurodegenerative disease. And essentially it all comes down to the macrophages and the microglia becoming clogged up with these pollutants or environmental particulars and releasing chronic inflammatory mediators that ultimately lead to disease. And IL-1 beta being one of those in atheroma and probably IL-6 and TNF in neurodegenerative disease and what have you. But I think this issue that you rightly bring up of what is in our environment and how does it cause pathology is really something that epidemiologists have spent a lot of time focusing on.(43:56):But actually in terms of trying to move from association to causation, we've been, I would argue a little bit slow biologically in trying to understand these issues. And I think that is a concern. I mean, to give you an example, Allan Balmain, who works at UCSF quite close to you, published a paper in 2020 showing that 17 out of 20 environmental carcinogens IARC carcinogens class one carcinogens cause tumors in rodent models without driving mutations. So if you take that to a logical conclusion, in my mind, what worries me is that many of the sort of carcinogen assays are based on driving mutagenesis genome instability. But if many carcinogen aren't driving DNA mutagenesis but are still driving cancer, how are they doing it? And do we actually have the right assays to interpret safety of new chemical matter that's being introduced into our environment, these long-lived particles that we're breathing in plastics, pollutants, you name it, until we have the right biological assays, deeming something to be safe I think is tricky.Eric Topol (45:11):Absolutely. And I share your concerns on the nanoplastic microplastic story, as you well know, not only have they been seen in arteries that are inflamed and in blood clots and in various tissues, have they been seen so far or even looked for within tumor tissue?Charles Swanton (45:33):Good question. I'm not sure they have. I need to check. What I can tell you is we've been doing some experiments in the lab with fluorescent microplastics, 2.5 micron microplastics given inhaled microplastics. We find them in every mouse organ a week after. And these pollutants even get through into the brain through the olfactory bulb we think.Charles Swanton (45:57):Permeate every tissue, Eric.Eric Topol (45:59):Yeah, no, this is scary because here we are, we have these potentially ingenious ways to prevent cancer in the future, but we're chasing our tails by not doing anything to deal with our environment.Charles Swanton (46:11):I think that's right. I totally agree. Yeah.Eric Topol (46:15):So I mean, I can talk to you for the rest of the day, but I do want to end up with a topic that we have mutual interest in, which is AI. And also along with that, when you mentioned about aging, I'd like to get your views on these two, how do you see AI fitting into the future of cancer? And then the more general topic is, can we actually at some point modulate the biologic aging process with or without help with from AI? So those are two very dense questions, but maybe you can take us through them.Charles Swanton (46:57):How long have we got?Eric Topol (46:59):Just however long you have.A.I. and CancerCharles Swanton (47:02):AI and cancer. Well, AI and medicine actually in general, whether it's biomedical research or medical care, has just infinite potential. And I'm very, very excited about it. I think what excites me about AI is it's almost the infinite possibilities to work across scale. Some of the challenges we raised in the Cell review that you mentioned, tackling, embracing complexity are perfectly suited for an AI problem. Nonlinear data working, for instance in our fields with CT imaging, MRI imaging, clinical outcome data, blood parameters, genomics, transcriptomes and proteomes and trying to relate this all into something that's understandable that relates to risk of disease or potential identification of a new drug target, for example. There are numerous publications that you and others have covered that allude to the incredible possibilities there that are leading to, for instance, the new identification of drug targets. I mean, Eli Van Allen's published some beautiful work here and in the context of prostate cancer with MDM4 and FGF receptor molecules being intimately related to disease biology.(48:18):But then it's not just that, not just drug target identification, it's also going all the way through to the clinic through drug discovery. It's how you get these small molecules to interact with oncogenic proteins and to inhibit them. And there are some really spectacular developments going on in, for instance, time resolved cryo-electron microscopy, where in combination with modeling and quantum computing and what have you, you can start to find pockets emerging in mutant proteins, but not the wild type ones that are druggable. And then you can use sort of synthetic AI driven libraries to find small molecules that will be predicted to bind these transiently emerging pockets. So it's almost like AI is primed to help at every stage in scientific investigation from the bench all the way through to the bedside. And there are examples all the way through there in the literature that you and others have covered in the last few years. So I could not be more excited about that.Eric Topol (49:29):I couldn't agree with you more. And I think when we get to multimodal AI at the individual level across all their risks for conditions in their future, I hope someday will fulfill that fantasy of primary prevention. And that is getting me to this point that I touched on because I do think they interact to some degree AI and then will we ever be able to have an impact on aging? Most people conflate this because what we've been talking about throughout the hour has been age-related diseases, that is cancer, for example, and cardiovascular and neurodegenerative, which is different than changing aging per se, body wide aging. Do you think we'll ever changed body wide aging?Charles Swanton (50:18):Wow, what a question. Well, if you'd asked me 10 years ago, 15 years ago, do you think we'll ever cure melanoma in my lifetime, I'd have said definitely not. And now look where we are. Half of patients with melanoma, advanced melanoma, even with brain metastasis curd with combination checkpoint therapy. So I never say never in biology anymore. It always comes back to bite you and prove you wrong. So I think it's perfectly possible.Charles Swanton (50:49):We have ways to slow down the aging process. I guess the question is what will be the consequences of that?Eric Topol (50:55):That's what I was going to ask you, because all these things like epigenetic reprogramming and senolytic drugs, and they seem to at least pose some risk for cancer.Charles Swanton (51:09):That's the problem. This is an evolutionary phenomenon. It's a sort of biological response to the onslaught of these malignant cells that are potentially occurring every day in our normal tissue. And so, by tackling one problem, do we create another? And I think that's going to be the big challenge over the next 50 years.Eric Topol (51:31):Yeah, and I think your point about the multi-decade challenge, because if you can promote healthy aging without any risk of cancer, that would be great. But if the tradeoff is close, it's not going to be very favorable. That seems to be the main liability of modulation aging through many of the, there's many shots on goal here, of course, as you well know. But they do seem to pose that risk in general.Charles Swanton (51:58):I think that's right. I think the other thing is, I still find, I don't know if you agree with me, but it is an immense conundrum. What is the underlying molecular basis for somatic aging, for aging of normal tissues? And it may be multifactorial, it may not be just one answer to that question. And different tissues may age in different ways. I don't know. It's a fascinating area of biology, but I think it really needs to be studied more because as you say, it underpins all of these diseases we've been talking about today, cardiovascular, neurodegeneration, cancer, you name it. We absolutely have to understand this. And actually, the more I work in cancer, the more I feel like actually what I'm working on is aging.(52:48):And this is something that James DeGregori and I have discussed a lot. There's an observation that in medicine around patients with alpha-1 antitrypsin deficiency who are at higher risk of lung cancer, but they're also at high risk of COPD, and we know the associations of chronic obstructive pulmonary disease with lung cancer risk. And one of the theories that James had, and I think this is a beautiful idea, actually, is as our tissues age, and COPD is a reflection of aging, to some extent gone wrong. And as our tissues age, they become less good at controlling the expansion of these premalignant clones, harboring, harboring oncogenic mutations in normal tissue. And as those premalignant clones expand, the substrate for evolution also expands. So there's more likely to be a second and third hit genetically. So it may be by disrupting the extracellular matrices through inflammation that triggers COPD through alpha-1 antitrypsin deficiency or smoking, et cetera, you are less effectively controlling these emergent clones that just expand with age, which I think is a fascinating idea actually.Eric Topol (54:01):It really is. Well, I want to tell you, Charlie, this has been the most fascinating, exhilarating discussion I've ever had on cancer. I mean, really, I am indebted to you because not just all the work you've done, but your ability to really express it, articulate it in a way that hopefully everyone can understand who's listening or reading the transcript. So we'll keep following what you're doing because you're doing a lot of stuff. I can't thank you enough for joining me today, and you've given me lots of things to think about. I hope the people that are listening or reading feel the same way. I mean, this has been so mind bending in many respects. We're indebted to you.Charles Swanton (54:49):Well, we all love reading your Twitter feeds. Keep them coming. It helps us keep a broader view of medicine and biological research, not just cancer, which is why I love it so much.******************************************The Ground Truths newsletters and podcasts are all free, open-access, without ads.Please share this post/podcast with your friends and network if you found it informativeVoluntary paid subscriptions all go to support Scripps Research. Many thanks for that—they greatly helped fund our summer internship programs for 2023 and 2024.Thanks to my producer Jessica Nguyen and Sinjun Balabanoff tor audio and video support at Scripps Research.Note: you can select preferences to receive emails about newsletters, podcasts, or all I don't want to bother you with an email for content that you're not interested in. Get full access to Ground Truths at erictopol.substack.com/subscribe
We're releasing episodes from our mini failure library while we're on production hiatus. This week's Mini Failure is about PFOA/C8 Contamination (Dupont Scandal). PFOA has been poisoning living creatures in the Ohio river basin for decades. One brave lawyer took on a huge corporation in this real life David and Goliath story. Original Air Date: December 12, 2022 Episode Sources https://en.wikipedia.org/wiki/DuPont https://www.business-humanrights.org/en/latest-news/dupont-lawsuits-re-pfoa-pollution-in-usa/ https://peri.umass.edu/toxic-100-air-polluters-index-current https://www.alleghenyfront.org/ohio-river-communities-are-still-coping-with-teflons-toxic-legacy/ https://en.wikipedia.org/wiki/Category:IARC_Group_2B_carcinogens https://www.cancer.org/healthy/cancer-causes/chemicals/teflon-and-perfluorooctanoic-acid-pfoa.html#:~:text=IARC%20has%20classified%20PFOA%20as,cause%20cancer%20in%20lab%20animals. Podcast - https://www.alleghenyfront.org/category/fullepisodes/ Ways to get in touch with us Email - thefailurologypodcast@gmail.com Website - www.failurology.ca
The Top News, publications and trials in Oncology for the week of March 28- April 4, 2024SENOMAC out in NEJM on Breast CancerACS & IARC 2022 Cancer Statisticsand more
Pulling weeds around the yard isn't most people's idea of a good time. Busting out a spray bottle of herbicide might be the easy way out, but what's the price we pay for that? Casey and Sara discuss the use of herbicides in agriculture and urban areas, including the recent news surrounding the use of dicamba. Resources for this episode: Protecting Pollinators from Herbicides: Rethinking Weed Management at Home Benefits and risks of the use of herbicide-resistant crops - Kathrine Hauge Madsen & Jens Carl Streibig How to use herbicides to safely control weeds on farms | OSU Extension Service Different pesticides dominate in different land-use areas Video: Herbicides: A Double-Edged Sword? What We Know about Herbicide Impacts on Pollinators History of Weed Control in the United States and Canada Herbicide Use in the Era of Farm to Fork: Strengths, Weaknesses, and Future Implications - PMC New Study: Agricultural Pesticides Cause Widespread Harm to Soil Health, Threaten Biodiversity Glyphosate-based herbicides and cancer risk: a post-IARC decision review of potential mechanisms, policy and avenues of research - PMC Weed Management in Lawns Guidelines--UC IPMBee Precaution Pesticide Ratings
In this “Spotlight on…” episode, host Gautam Bhattacharyya welcomes arbitrator and SVAMC AI Task Force chair Benjamin Malek (FCIARB) to discuss what led him to a career in international arbitration. The pair discuss the challenges and opportunities presented by new technologies like AI, and how to maintain and improve the effectiveness of arbitration in an ever-changing legal landscape.----more---- Transcript: Intro: Hello and welcome to Arbitral Insights, a podcast series brought to you by our International Arbitration practice lawyers here at Reed Smith. I'm Peter Rosher, global head of Reed Smith's International Arbitration Practice. I hope you enjoy the industry commentary, insights and anecdotes we share with you in the course of this series, wherever in the world you are. If you have any questions about any of the topics discussed, please do contact our speakers. With that, let's get started. Gautam: Hello everyone and welcome back to our Arbitral Insights podcast series, and thank you for joining us. I am delighted to have with us as our guest today, Ben Malek. Uh Hello, Ben. Ben: Hi Gautam, thank you for having me. Gautam: It's great to have you with us. Now, I'm gonna introduce Ben, but I'm gonna preface this by saying I love to see new arbitrator talent emerge and I'm unashamed about that. I love to see it. And Ben epitomizes this new number of arbitrators that I just love to see. Ben has got a very interesting background. Uh he's based in New York, but he – I'm gonna share some interesting stuff about him with you all. He's obviously a practitioner of arbitration. He's also an arbitrator and he has great experience of being in private practice and also working for institutions who deal with arbitration. And we'll come to that in the course of our discussion. He also speaks an incredible number of languages, which would, which certainly is something worth noting. So, so obviously, not only apart from English, but he also speaks fluent German, Romanian, Spanish and French, and he can also turn his hand very ably to Italian, Hebrew, Mandarin and Korean. And I'm just in awe of that, Ben. But so obviously, you can see we're talking uh to, to someone who's truly international. We'll talk a little bit about what you do Ben in the course of this podcast but for our listeners, Ben is with T.H.E Chambers in New York. And as I said, prior to his current role, he has worked in private practice at some major law firms and also with arbitral institutions. So, on that note, a huge welcome again to you, Ben and I'm much looking forward to our discussion. So let me ask you the first thing a little bit about your background because you, you do have a very interesting background just based purely on your geographic origins, your languages and how the world has just seen so much of you. But could you just tell us a little bit about your background and how you found the law and arbitration or conversely how law and arbitration found you. Ben: Thank you so much Gautam for inviting me such an honor to be on your podcast. I always look forward to the new episodes you have so it's uh it's truly a pleasure. Thank you. So I grew up in Germany. I was born and raised in Germany to Romanian parents and my maternal grandparents wanted to talk German to us because that's what first generation immigrants do. However, they spoke a very broken German because they're German just wasn't that good. So my mother had the idea of them talking to me in Romanian, which was their maternal language. And this way, I would have two languages once I hit kindergarten, which is exactly what happened. I talked Romanian at home until I started kindergarten, which is where I learned German. So that was the beginning of my duality, I guess. Later on my parents decided that an international school would be best for my brother and I, I have a twin brother by the way. So we went to an international school where languages was really emphasized. I was taught everything in English. English was my maternal language, German was my first foreign language. And that's when I started to really learn my other languages. French became my second foreign language, Spanish became my third foreign language. So by the time I graduated high school I was fluent in five languages. So that was uh extremely helpful at that time, and, uh, that's when I knew that I needed to do something with languages. Unfortunately, and just to give a little more background, I decided to pursue dentistry. I'm not sure if you knew that Gautam. Gautam: No, I didn't know this. You're a man of many, many hidden talents. Ben, I had no idea. I I know now. Ben: So I went to dental school and because, because I grew up in, in Germany to Romanian parents, I always wanted to, to understand my origins and see where I'm from. So I went and studied uh dentistry in Romania. So while in Romania, I graduated dentistry, I came back to Germany and actually started practicing dentistry. At which point I realized that that might really not be the best career. And I'll explain why. I loved the attention to detail. I loved the artistry of it. But the one thing that I really couldn't deal with was talking to the walls. And what do we, what do I mean by that? When patients sit in the chair before you and you talk and their mouth is open, they cannot respond. And I never realized how much that would impact me psychologically. I felt like I was in isolation, I was talking to them and I talked to them in so many languages, but nothing was coming back. So at that point, I realized with my first year of practice that even though I like what I do, I don't think I could do that for the rest of my life. So I decided to go back and study law. And during my last year of law school, I got a job at BDO in Romania. And because of my languages, I was on-boarded on an arbitration which was held in English with a German party and a French party. And because they had somebody that spoke German and French, they decided to save some costs and have me translate. So that was my introduction to arbitration. And I thought it was wonderful. It was absolutely delightful, especially in a country where the judicial system is sometimes questionable in the sense that you may win for your clients, but you win such a small insignificant amount that you can't really consider it to be a win. I realized that arbitration is a true fairness out there and it is accessible. So it was that moment during that arbitration that I realized and decided to pursue a master's in arbitration, which I ultimately did. I went to the University of Miami where I pursued my LLM. I had the privilege to study under Jan Paulsson, Marike Paulsson, Carolyn Lamm, Jonathan Hamilton. And I really did have the privilege to study under Martin Hunter who has passed away just a few years ago. So it was, it was an amazing masters and that really gave me the basis to start my career in arbitration. Gautam: Well, now that's an incredible journey and a truly uh a diverse background, a truly a diverse professional background you've had and you know, thank you for sharing those great thoughts. Now figures while you're in international arbitration, because you truly are international Ben, in the truest sense of the word. Now you've mentioned some amazing teachers that you had in the law who are truly not just first class, they're world class in terms of names. But um I'm most interested to hear from our guests as to who they would say have been their biggest mentors and inspirations in their career. So if you were to look at your legal career, and it's not often that I do a podcast with someone who's a qualified dentist as well as a qualified lawyer. But there's always a first for these things. But in your career as a lawyer, I wonder if you could share with us some of those names who have been your great mentors and inspirations. Ben: Absolutely. I think all of us owe our entry especially in arbitration to someone as the saying goes, we we need somebody to open the door, we gotta walk through it ourselves, but somebody is always there to open the door. For me I really had, John Fellas was an amazing mentor. I got to know John during my masters and we've kept in touch ever since. What struck me about John was his humbleness and his absolutely striking kindness. I mean, I was a mere student who just got my feet wet and he always made the time, always respected my time, always trying to see how and where he can help me or brainstorm what to do or where to do. It was a true mentorship. And I value that, especially after so many years, I, I wouldn't be here without him. One more mentor that I can think of is Crenguța Leaua. She's um with LDDP in Romania. Over the years, we've got to know each other. She's just such an amazing practitioner who has truly shown me what there is to do and has helped me or help me guide my way into arbitration. So uh without those two, I wouldn't be where I am. But I would also say I really, I consider that every, every person I worked for in the past, every boss I had potentially got me into where I am. So that being said when I worked at the American Arbitration Association or the ICDR to be more, more precise, Tom Ventrone was an amazing mentor. I mean, I learned so much from that and it was interesting because I only got to know him once I was at the ICDR. I did, I quite frankly and uh I don't know if I should say this out loud, but I've never heard of him before. Um However, when I was there, I realized that I don't think the ICDR would be where it is without Tom Ventrone and his team. So that was absolutely outstanding. Gautam: Thank you very much. And you know, some really great names there, Ben that you've given, who've been your real guiding lights in your career so far and you, you're very fortunate to have had all of those people. Now, you've alluded to it in your answer that you just gave and I mentioned it in the introduction that you've worked at major law firms and you've worked for arbitral institutions. I wonder if you could share with us a few things that you've learned by having had the benefit of working on both sides of the fence, so to speak. Ben: I would say at first when I started off at institutions and in all disclosure, I didn't start my career at the American Arbitration Association, I actually started at CPR Institute in New York. I filled in this case manager after which shortly after I got the opportunity at the ICDR. The one thing I learned was really what an impact an institution can make and what a driving force it is in arbitration. Of course, I've learned and I've been part of adhoc arbitrations and that's when you really start to appreciate institutions and what they can do. So I really do value institutions for what they are. I believe the work is truly in vain. And during my time at the ICDR, I mean, it was high volume, in the sense that we administered many cases. And when COVID hit, it felt like those cases doubled even though they didn't. It was just that the traffic of email because nobody had any, any place to be. There was no traveling, there were no dinners, there were no vacations. Everybody was on their email all the time. But it was uh truly valuable. You learn how to manage your time, you learn how to manage other people's time and you learn how to truly value time and deadlines and how to set them fairly. During my time at the American Arbitration Association, I was truly privileged to be part of what they call IARC which on the international part is the International Administrative Review Committee. Where different challenges are being discussed and decided upon. So having been part of that and having seen many cases come in and out and the decisions thereof have really helped me to make better decisions as counsel. Once I, I left the institution. Gautam: I think that amazing kaleidoscope of experience that you had in private practice and with institutions brings us nicely to the next question I wanted to ask you. And this and again, I'll preface it with, again saying how much I love to see new arbitrator talent coming through. I love to see it because we need new talent, fresh blood coming in and you are certainly one of that group. And so I was mentioning that you are with T.H.E Chambers in New York. And I'd love you to tell us a little bit about the work of T.H.E Chambers where you are an arbitrator and including, first of all, if you wouldn't mind what T.H.E stands for a Ben. Ben: Thank you, Gautam. Absolutely. So, as a young arbitrator, I think it's interesting to see that there are not many out there and if they are, it is always combined with some sort of additional workload, whether that is tribunal secretary or they still work as an associate somewhere else or consultant. It, it it is self explanatory why that happens. Uh But I am privileged, I believe to be part of a small group of young arbitrators. And I, I think it's, it's highly important to understand that even young arbitrators do have a specific know-how that we would not have had 20-25 years ago whenever I'm approached or I'm asked about my expertise, I do unfortunately get the answer oftentimes that people didn't realize that a young practitioner could have so much experience or could have the pertinent know-how. And I think that's where arbitration really expanded and advanced in the last decade or two. We have master degrees at, at so many universities throughout the world. We have so many courses and we have so many practitioners willing to talk and mentor people that it is truly possible at a younger age to become an arbitrator. Gautam: I completely agree and if I'm not mistaken, the, you know, the, T.H.E Chambers stands for Tribunals, Hearings and Enforcement, is that correct Ben? Ben: That is correct. Absolutely. Yes, thank you. So, when I started off sitting as an arbitrator, I was approached and, and I happily work with Arbitra International out of London as a transitional member as they call it. And when thinking about it, I had two options. I could either say this is Benjamin Malek arbitration or I could start something bigger. And that was my goal. So when starting T.H.E Chambers, which as you said, stands for Tribal Hearings and Enforcements, the big challenge was what I call it. And despite the fact that T.H.E, it, it looks very nice together as ‘the', um it does stand for tribunal hearings and enforcements. And that is because I believe that those are the core points that any practitioner will always look for. Uh you need to have a tribunal for an arbitration, you need to have a hearing, any sort of hearing un unless it's a paper arbitration. Um And then the, either the arbitrator or the parties waive the hearing and you gotta make sure that any award is enforceable. So from my council of work that I started off with at the beginning of T.H.E Chambers, that was my expertise, the enforcement part of it. Uh that was also one of the most important aspects that I dealt with while at the ICDR when a case comes in that was the first question. How does the case look and will the award be enforceable? So that is one thing that I definitely learned at the institutions and that I carried with me to always look at the arbitration from the end rather than from the beginning, which is the enforcement stage. T.H.E Chambers - that's what it stands for. Currently it is set up to on board more younger arbitrators worldwide because of COVID and then changes in COVID, we haven't gotten there yet but I hope we'll get there very soon. Gautam: I've got no doubt you will. And you know, and as the saying goes, if anyone's good enough, they're old enough. And there's no doubt that you and the team bring a lot of great energy and insight into arbitration and it's certainly not something that should be homogenous. So it's fantastic to know that you can bring all your talents to bear. I want to turn next to another aspect of what you do because I know that you are a member of the Silicon Valley Arbitration and Mediation Center and particularly its Artificial Intelligence task force. Now, one of the things that all of us will be very well aware of is that artificial intelligence, AI, is an incredibly happening concept. It's developing and it'll develop more and more and it has its role and will have its role in arbitration. I know that you've been part of the team that's been looking at guidelines for the use of artificial intelligence in international arbitration. And I wonder if you could just share some of your thoughts as to what the potential usage of artificial intelligence might be in international arbitration and some of the risks and issues that we should be aware of. Ben: Yes, thank you. So I have been a part of the Silicon Valley Arbitration Mediation Center for quite some time and um when the New York case versus Avianca came out where the claimants council used chatGPT to come up with cases and, and I use that word deliberately, ‘come up' with cases to use against Avianca. It turned out that all of those were in fact made up by chatGPT as uh what we would call hallucinations. The judge dismissed the case and uh actually sanctioned the attorneys. To that point, I realized that it is only a matter of time until this issue flows into arbitration, especially arbitration. We work in so many jurisdictions with so many different parties. And specifically, since COVID, most arbitrations have been online, some have stayed online, some still have a hearing component in person, but most of it is online. And the big question was, do we need guidelines for the use of artificial intelligence in arbitration? So I had discussed that with the leadership at the Silicon Valley Arbitration Mediation Center and they gave me carte blanche to see what we can come up with so I was privileged to have a team of experts help me draft the guidelines for the use of AI in arbitration. My team was composed of Elizabeth Chan in Hong Kong, Orlando Cabrera in Mexico, Sofia Klot in New York, Dmitri Evseev in London, Marta Garcia Bel, which now is in New York, Soham Panchamiya and Duncan Pickard in New York. I was truly blessed, I would say to have these colleagues. It became a true adventure that we all went on when we started discovering what AI could potentially do and what could potentially be prevented. So we took around nine months to draft guidelines. We had no timeline, but we did come up with what I would say good guidelines or a good basis of guidelines in October, we have put it out for the public to comment on. Uh the commenting period is still open until December and institutions can comment until February. And the goal is not to come up with guidelines that people can use, but to get a full consensus of the arbitration community on how they would like to use these guidelines and what they believe is relevant. If something is not relevant, then there's no reason for us to have it in there. So that was the whole idea behind it. The other aspect we were looking at was when it came to cybersecurity, each institution came up with their own guidelines and quite frankly, they use different words, but they're saying the same thing. And we are hoping to avoid having several guidelines on AI and to comprise it all into one. I think it's gonna be a very difficult task. I'm not sure we will succeed, but we are giving all institutions the opportunity to give their input or it submits their commentary to the guidelines so that every practitioner could look into the commentary for the respective institution when the case goes to arbitration. We were looking at several aspects regarding the use of artificial intelligence in arbitration. Two main aspects are disclosure and confidentiality. With regards to disclosure, we actually have an open option for the community to vote on. And that is whether a two prong test should be used to decide whether a party or the arbitrator should disclose the use of artificial intelligence or whether it should always be up to the parties to decide or to as the tribunal for opposing party to disclose the use of artificial intelligence. We weren't sure internally, we debated heavily and we came to the conclusion to leave that question up for the public to decide on. Um it did come back or as of now, the results are interesting, which is that in Europe, there is a more libertarian approach. Whereas uh the US and some common law jurisdictions voted for a two prong test, which I believe to be quite interesting, uh quite frankly. Um if this continues to be open ended, we might leave it up to the parties to decide which option they would ever put in. But ultimately, the goal is to draw awareness of the use of AI to let parties and arbitrators as well as council understand that artificial intelligence is not open ended. That if it's used outside a closed circuit information can be leaked or can be disclosed one way or another and to just draw attention to the fact that A I can only be used to disclose information, but also to create other sorts of the information that would otherwise not be there. Whether that is good or bad will be up to the parties to decide, but it is important to understand what AI can do and what the consequences are. Gautam: I agree with you and it's something that's gonna develop and develop. There's no doubt about that and we've not seen the last of it. I mean, it's gonna be happening for sure. And we just have to see what does transpire, but look, thank you for your great work on everything you're doing. You're not just, you know, doing arbitrations, you're doing thought leadership, you're driving all of these things and it's really great. And uh I'm just, you know, and I look forward to talking to you more about these things as these things progress. Now with these podcasts, we, we always end our podcast with a little bit of lighthearted conversation because I think our listeners will have got a really good handle on your incredible talent in the course of this podcast, your thoughtfulness and your experience. What I want them to also get a feel of is some of the more fun side of things. Now, I know Ben that you are a very proud daddy to a couple of daughters, one of whom is really a newborn. And uh, and I've, and I'm just so ecstatic for you and Rebeca on your two daughters. But let me ask you this when you do have some spare time from not being a, a very busy daddy as well as a very busy arbitrator. What sort of music do you particularly enjoy listening to? Have you got any favorite bands or groups or singers or even a favorite album that you love to play? Ben: Regarding music that's an interesting topic. Before I went on my dentistry career I actually worked in music management. Gautam: you are so multitalented. It's unbelievable. Go on. Sorry. I just could not resist saying that. Ben: Yeah. No, thank you. It's uh I, I just like life. I like life. Life is important. It's what drives us. I will say this and, and you know, thank you for the question. But we all live to work, but we also work to primarily live. And I think it's really important to, to, to know that I always believe that one of the most important things in life is to live and to know how to live. So, uh I did get into music management very early in my life. We were host to several big names, but to answer your question, my favorite music, as I always said is good music. I especially nowadays where the charts are filled with explicit lyrics. I actually like to go back to the Beatles. The Beatles are one of the foundations I believe of modern music. Now, given the fact that a new song was actually just released with the help of AI, I think that it's, it's worth to go back and, um, and really understand the changes that as Sir Paul McCartney, um and his colleagues have made. Yeah, I would definitely call The Beatles my favorite music. Gautam: Oh, fantastic. Well, it's, you know, that's a great choice. And, uh, you know, again, as a first, I've never done a podcast with someone who worked in music management, then who, who became a dentist and then became a lawyer and who can speak about 10 languages. So this is a complete first for me. So let me just ask you one last question in this podcast. So, you know, you are a very international person and we ascertain that just from speaking to you in the course of this podcast and you've no doubt traveled very widely because you've worked around the world in many places. Is there one place apart from where you grew up, okay, so excluding that, is there one place in the world - and excluding New York where you live - ok, Is there one place that you just love traveling to? Ben: Oh. That's a difficult question. I would have to say, I've always enjoyed traveling to London. My brother is actually a physicist and he did his PhD in Cambridge. I thought those were the most fun trips I've ever had. To fly to London Cambridge is, is amazing. Uh Whoever hasn't been uh it is really missing out. London is just stunning. I mean, the amount of history and just the culture and the multiculture you have. It's, it's just, it's great. Um I guess uh deep down I am a European so London is always there. Paris is absolutely yeah, romantic. I mean, I am married with two kids so Paris is always, it is always a good idea. Gautam: Yes. Ben: Yeah. The only thing I would add is I love, I would love to see more of the world. I do want to travel and see places. I I've never been, I haven't been to Australia yet, but in general, I would love to go see, I hope to go to Hong Kong maybe during ICA, maybe not, but just to see Hong Kong and see uh see more than I have seen yet. Gautam: Fantastic. Well, look, Ben. Thank you. It's been an absolute delight to speak to you in this podcast. Thank you for being such a superb guest and for sharing all of your stories and your background, your thoughts. And uh I look forward to seeing you very soon. You know, I hope you'll because we're recording this podcast on a Friday. So I hope that you will have a great weekend and I look forward to seeing you in person soon. Thank you. Ben: Thank you so much Gautam, Likewise. And if I may just end on one note, I do wanna thank my wife. I don't think I would be the person I am without her. And she inspires me to be a better person every day. Gautam: You know that I, I think that's so fitting Ben. And I'm gonna say this in response, I'm going to say two quick things in response to that. One, you're absolutely correct because I have the great honor and privilege of knowing Rebeca. And I know that she's a wonderful, wonderful lady and you are indeed very lucky to have her. And I also will say the second thing I will say is that many years ago, a judge got sworn in as a Supreme court judge here and one of the former Supreme court judges who was giving a speech when he became a judge said that behind every successful man, there's a surprised woman and Rebeca shouldn't be surprised at how successful you've been. But you know, you are very fortunate to have her. So thank you for mentioning her. Ben: Thank you. And thank you for having me, Gautam. It was an absolute pleasure looking forward to meeting you in person. Gautam: Looking forward to that. Outro: Arbitral Insights is a Reed Smith production. Our producer is Ali McCardell. For more information about Reed Smith's Global International Arbitration practice, email arbitralinsights@reedsmith.com. To learn about the Reed Smith Arbitration Pricing Calculator, a first of its kind mobile app that forecasts the cost of arbitration around the world, search arbitration pricing calculator on reedsmith.com or download for free through the Apple and Google Play app stores. You can find our podcast on Spotify, Apple, Google Play, Stitcher, reedsmith.com and our social media accounts at Reed Smith LLP on LinkedIn, Facebook and Twitter. Disclaimer: This podcast is provided for educational purposes. It does not constitute legal advice and is not intended to establish an attorney client relationship nor is it intended to suggest or establish standards of care applicable to particular lawyers in any given situation. Prior results do not guarantee a similar outcome, any views, opinions or comments made by any external guest speaker are not to be attributed to Reed Smith LLP or its individual lawyers. All rights reserved. Transcript is auto-generated.
The Arctic Report Card is an annual report led by the National Oceanic and Atmospheric Administration(NOAA). The efforts of scientists and climate specialists to create this robust scientific report every year is impressive. The amount of work contributed to this scientific document is extremely important in documenting climate change in the Arctic, which is warming at an alarming rate. Today's episode is a conversation with Rick Thoman, a climate specialist at IARC's Alaska Center for Climate Assessment and Policy (ACCAP). Rick is a contributor and editor of the Arctic Report Card and was also awarded NOAA Distinguished Career Award for Professional Achievement in 2020. Rick was honored after a 30 plus year career with the National Weather Service for continued efforts to improve climate services in Alaska and for outstanding outreach efforts working with the Alaska Native community.Rick discusses the greening tundra, the melting sea ice and the adaptability of the indigenous people and how helpful their generational observations are on the changing landscape of the North.The Report Card is intended for a wide audience, including scientists, teachers, students, decision-makers and the general public interested in the Arctic environment and science. It is encouraged that the Report Card to be utilized and studied, as the scientific community has created it to be an easily read report for the general population to better understand the complexities of the warming Arctic.Here are the links to the 2023 Arctic Report Card and NOAA website:https://arctic.noaa.gov/report-card/https://www.arctic.noaa.govYou can visit my website for links to other episodes and see aerial photography of South Central Alaska at:https://www.katiewritergallery.comThanks for tuning in to Alaska Climate & Aviation Podcast!Katie WriterJournalist/Pilot/Photographerktphotowork@gmail.comSupport the show
Check out Citrine: My favorite, one-stop-shop for all things low-tox skincare and beauty. Save 10% by using code: ashleytaylorwellness (all brands except TheraBody, Vintner's Daughter, and Kypris) Click here: https://citrinenaturalskin.com/?sscid=71k7_56uy45:00 - IARC classifies shift work as a group 2A carcinogen6:00 - CDC blog - https://blogs.cdc.gov/niosh-science-blog/2021/04/27/nightshift-cancer/8:30 - Ashley's top sleep tips10:30 - Smart bulbs are terrible for our mitochondria10:45 - SaunaSpace photon light Code: ASHLEY will save you money12:00 - Castor oil packs Code: Ashleytaylorwellness https://www.shopqueenofthethrones.com/?platform=grin&link_id=1533705&token=7LWCG2nUcQOCWMhwU9UvTPrarooYPY1p&contact_id=acb055d1-6b9b-4268-a8c6-8e88eb2048fc&attribution_window=3012:45 - Caffeine13:30 - Ra Optics “Popp” https://raoptics.com/ashleytaylorwellness Code: Ashleytaylorwellness15:00 - CGMs https://www.nutrisense.io/?rfsn=6778584.5479636&utm_source=affiliate&utm_medium=referral&utm_campaign=Ashleytaylorwellness&utm_term=6778584.547963617:30 - My favorite non-toxic and comfortable mattress Essentia REM5 https://myessentia.com/collections/memory-foam-mattresses?sscid=c1k7_4es4g22:00 - Oura ring https://ouraring.com/?utm_source=4544&utm_medium=affiliate&cppid=4544&cpclid=1dde3087e0a5479890331d306eea7a2b&utm_campaign=oura&utm_content=&utm_term=Ashley+Taylor+Wellness+LLC22:46 - Oura post - https://www.instagram.com/p/Cy_TYRrRmV1/?hl=en&img_index=324:30 - Therasage bamboo weighted blanket blocks emf Code: ashleytaylorwellness20 saves you 20% until Dec 25th! therasage.com26:12 - Mitozen - Sandman - https://www.mitozen.club/?ref=Lx15YMHzqBnYBd MITOZEN Club (PMA) $10 one-time fee. Save with code ASHLEYTAYLORWELLNESS29:00 - Navage sinus irrigation29:37 - Importance of morning sun30:49 - Epsom salts 2-4 cups before bed 32:20 - Sleep supplements:*Tranquinol by Premier Research Labs (on Fullscript) https://us.fullscript.com/welcome/ashleytaylorwellness/store-start?signup_source=shareable_protocol&source=shareable_protocol&source_record=VHJlYXRtZW50UGxhblRlbXBsYXRlLTEzOTU2Mg%3D%3D*Sandman by Mitozen (see 26:12 for the link^)*Magnesium breakthrough from Bioptimizers *Kava*5-HTP*L-theanine*GABAFollow me on Instagram here:https://www.instagram.com/ashleytaylorwellness/https://www.instagram.com/highmaintenancehippiepodcast/Apply for 1:1 Coaching: https://secure.gethealthie.com/appointments/embed_appt?dietitian_id=1270471&require_offering=true&offering_id=133465&hide_package_images=false
Ron Gang, 4X1MK, had his early amateur radio beginnings in Canada, and later immigrated, as part of a group, to Israel in the 1970s, where his amateur radio license, skills, and equipment were highly appreciated and valued. Always an active amateur radio operator, 4X1MK is willing to try every operating mode. Ron is also a musician and painter who shares his amateur radio story and his perspectives of the amateur radio service in Israel, past and present.
In this episode, Sujani sits down with public health physician Dr. Arunah Chandran. They discuss Arunah's clinical work and how she became interested in the field of public health, her work at the Ministry of Health of Malaysia and experience moving to France to work with the IARC, and share job application tips for those interested in working with international organizations. You'll LearnThe clinical encounters that led Arunah to becoming involved in the field of public health What additional training Arunah went through to become a public health physicianArunah's research and work in noncommunicable diseases and women's health with the Ministry of Health in MalaysiaFinding different job opportunities within the same company or systemAdvice on how to figure out if you should seek an additional degree or notArunah's work with the IARC and her experience moving to a different country for workTips on applying for jobs with international organizations and the benefits of keeping a log of values and responsibilities you have had at every positionToday's GuestPublic health medicine specialist, with experience in clinical medicine, health systems, NCD policies, public health operations, and clinical research. Led national policy response for cardiovascular diseases, diabetes, and cancers in Malaysia. Currently, focused on implementation and evaluation of affordable and equitable integrated multi-cancer early detection package to improve cancer outcomes in resource-constrained settings. Initially trained as a physician, I have a double Masters in Public Health and Medical Aesthetics/Anti-aging as well as a doctorate in Public Health (Epidemiology).ResourcesConnect with Arunah on LinkedIn Learn more about the International Agency for Research on Cancer Listen to the previous episode on the Public Health Resume and CVSupport the showJoin The Public Health Career Club: the #1 hangout spot and community dedicated to building and growing your dream public health career.
Nuclear power seems like exactly what we want: a reliable, low-carbon source of huge amounts of energy. So why does it produce less of our electricity per capita now than it did decades ago?A major reason: nuclear power suffers from very bad PR. In this episode of The Studies Show, Tom and Stuart discuss the ever-present safety fears surrounding nuclear power, the problems of nuclear waste, and the reasons that nuclear power is so drastically expensive. How many people died in the Chernobyl and Fukushima disasters, anyway? Could new reactor designs fix some of nuclear power's problems? And is nuclear power so irredeemably unpopular that we should just give it up and move on to renewables?The Studies Show is sponsored by the i, the UK's smartest daily newspaper. You can get a half-price deal on digital subscriptions to the whole paper, including full access to Stuart's columns and his subscriber-only science newsletter, by following this special podcast link.The Studies Show is also sponsored by Works in Progress, an online magazine about science, technology, and human progress. The newest issue of Works in Progress is out now, with essays on topics like the discovery of the malaria vaccine and the surprising economics of copper.Show Notes* Fumio Kishida eats a Fukushima flounder; John Selwyn Gummer eats a British beef burger (with his daughter)* Graph showing the plateau in nuclear power generation* Hannah Ritchie on the safest sources of energy; review comparing health effects of different sources of electricity generation* Jack Devanney on plutonium in Works in Progress; and on why the “Linear No-Threshold” model is “nonsense”* Jason Crawford summary & review of Devanney's book Why Nuclear Power Has Been a Flop* Article on the wildly-varying cancer and death numbers suggested for Chernobyl* UNSCEAR report; IAEA estimate of deaths; Alternative TORCH estimate; IARC estimate of cancers up to 2065* IAEA analysis of Fukushima water and comparison to normal levels of radiation* Report on deaths from the evacuation after the Tōhoku earthquake/tsunami* Tom's article in the i on Fukushima and nuclear power's PR problem* Article on spent fuels and waste from nuclear reactors* Summary of “breeder” and “burner” reactors* Hannah Ritchie on mining for low-carbon energy vs. mining for fossil fuels* Article on the pollution produced from lignite mines* Sceptical view of new nuclear plant technologies* Graph of solar panel prices dropping over timeCreditsThe Studies Show is produced by Julian Mayers at Yada Yada Productions. This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit www.thestudiesshowpod.com/subscribe
Join Dr. Debrah Harding, an expert in integrative oncology, as we explore often-ignored cancer risk factors. We'll discuss environmental culprits like heavy metals and chemicals, along with lifestyle choices related to diet and estrogen balance. These elements significantly influence cancer risk and outcomes. Additionally, we'll stress the value of thorough medical forms in spotting these risks and elevating patient care. We'll also address radiation dangers, highlighting a case study. This leads to a broader conversation on electromagnetic effects, risks of phones being held close, and potential harm from earbuds. Take note: The International Agency for Research on Cancer classifies certain radio waves as "2B carcinogens." Next, we evaluate the role of naturopathic oncology care in enhancing cancer treatments. We'll clarify misconceptions, spotlighting the significance of the FABNO title. As we conclude, Dr. Harding offers strategies for minimizing pill use and countering supplement fatigue for cancer patients. This episode delivers crucial information for both practitioners and patients.EPISODE CHAPTERS:(0:00:01) - Modifiable Risk Factors for Cancer(0:08:17) - Radiation Exposure and Its Health Impact(0:13:05) - Electromagnetic Hypersensitivity and Its Symptoms(0:24:59) - Naturopathic Medicine in Oncology Care(0:35:11) - Naturopathic Care in Cancer Treatment(0:39:21) - FABNO Certification and Integrative Oncology CareLinks:American Institute for Cancer ResearchNational Association of Environmental MedicineJoin Over 18,000 Leading Medical Professionals and Become a Vibrant Wellness Provider Today!
On The Studies Show, we're all about trying to get it right. But sometimes we get it wrong. Every so often, we'll do a feedback/corrections/clarifications episode where we go back and try to correct any errors in the last few episodes, and reply to your more general feedback. This is the first one of those, covering Episodes 1-8. Our thanks go to everyone who pointed out our mistakes. Please keep the feedback coming!Show notes* Retatrutide phase 2 trial; semaglutide vs. tirzepatide cost-effectiveness study* The IARC's useful, detailed report on (e.g.) whether being a firefighter is a cancer risk; the FDA disagrees with the IARC on whether aspartame should be labelled as a “possible” cause of cancer* The newest published trial of psilocybin for depression* Stuart's more recent article on ultra-processed foods, with discussion of mechanisms; Chris Snowdon's two part review of Chris van Tulleken's book; interview with Herman Pontzer on his book BurnCreditsThe Studies Show is produced by Julian Mayers at Yada Yada Productions. This is a public episode. If you'd like to discuss this with other subscribers or get access to bonus episodes, visit www.thestudiesshowpod.com/subscribe
Have you seen the headlines? Social media and the internet at large are abuzz with the controversy surrounding the well-known artificial sweetener aspartame. The recent classification of aspartame as a possible human carcinogen (category 2B) by the International Agency for Research on Cancer (IARC) has sparked a new wave of discussions, concerns, and media sensationalism. In this episode, Alan Aragon helps unravel the complexities and provide a more balanced perspective on this hot topic. Alan is no stranger to the podcast, but in case you're not familiar with him, he's a nutrition researcher and educator who's been at the forefront of the evidence-based fitness movement for over a decade now and has helped countless fitness enthusiasts, professional athletes, and top coaches, and even influenced my own work. Alan has a knack for translating science into practical application, which you can see for yourself if you check out his research review, which was the first of its kind in 2008. In this podcast, you're going to learn about . . . The latest news and opinions on aspartame and its classification by the IARC The negative connotations associated with artificial sweeteners and why people often overlook their benefits Animal testing on artificial sweeteners and whether the findings can be applied to humans Practical considerations for the consumption of artificial sweeteners, their place in a balanced lifestyle, and how much is safe to consume And more . . . This episode offers valuable insights for anyone interested in artificial sweeteners, diet, and overall health, cutting through the confusion and fear to provide an evidence-based viewpoint. So, click play to listen and learn about aspartame and its effects on health. Timestamps: 0:00 - Please leave a review of the show wherever you listen to podcasts and make sure to subscribe! 06:36 - What is the latest news with aspartame? 13:30 - Do you have an opinion on what is going on with aspartame and the IARC? 18:28 - Do you think the negative findings of aspartame and artificial sweeteners has put a bad connotation on them? and prevents people from looking into the benefits of artificial sweeteners? 27:41 - My award-winning fitness books for men and women: https://legionathletics.com/products/books/ 29:41 - If animal testing shows an increase in cancer risk can that really be applied to humans? 57:16 - Where can people find you and your work? Mentioned on the Show: My award-winning fitness books for men and women: https://legionathletics.com/products/books/ Alan Aragon's Research Review: https://alanaragon.com/aarr/ Alan Aragon's Website: https://alanaragon.com/ Alan Aragon's Instagram: https://www.instagram.com/thealanaragon/
The International Agency for Research on Cancer's (IARC) conclusion that the sweetener aspartame "possibly" causes cancer is definitely stupid. You can eat a diet consisting of 91 percent 'ultra-processed' food and be healthy, according to a new study. Let's take a closer look.
De acordo com a Organização Mundial da Saúde (OMS) e a Agência Internacional de Pesquisa sobre o Câncer (IARC), estima-se que, globalmente, cerca de 1,8 milhão de novos casos de câncer colorretal sejam diagnosticados a cada ano1, sendo esse o terceiro tipo de câncer mais comum. Em mais um episódio do podcast, #BoraFalarDeCâncer, especialista e paciente falam sobre a importância do diagnóstico precoce e também do acolhimento, tanto do profissional da saúde quanto das famílias. O câncer colorretal é tema do 4º episódio da série de podcasts #Borafalardecâncer, que discute a jornada do paciente. Esta série é patrocinada pela Pfizer e esse episódio foi apresentado pela jornalista Barbara Guerra. Ouça! Convidados: Dr. Fabricio Ruzon (CRM: 166905-SP) e Farley Lopes. Referências: World Health Organization; Disponível em: 1Colorectal cancer – IARC (who.int); acessado em: 24/07/2023 National Cancer Institute; Disponível em: Colorectal Cancer — Cancer Stat Facts acessado em: 24/07/2023 Inca; disponível em: Câncer de intestino — Instituto Nacional de Câncer - INCA (www.gov.br)/ ; acessado em: 24/07/2023 Ministério da Saúde – Disponível em: https://www.inca.gov.br/sites/ufu.sti.inca.local/files/media/document/estimativa-2020-incidencia-de-cancer-no-brasil.pdf - acessado em 04/08/2023 Ann Oncol. 2023;34(1):10-32.A. Cervantes, R. Adam, S. Roselló, et al, on behalf of the ESMO Guidelines Committee - acessado em 04/08/2023 PP-UNP-BRA-2605See omnystudio.com/listener for privacy information.
Have we soured on artificial sweeteners??Recently the World Health Organization (WHO) and the International Agency for Research on Cancer (IARC) released statements about artificial sweeteners and potential risks to our health. The IARC went as far as to list aspartame as “possibly carcinogenic to humans”So, what's all the hubbub about? Are artificial sweeteners actually bad for us? Does data exist to support a link between artificial sweeteners and cancer? Metabolic disease? Any other health concerns?Do we have to stop drinking "sugar-free" beverages? Should we panic??NO!Listen to Your Doctor Friends! Let us help you understand the relevant data, and provide some context. We're your friends. Its what we're here for :)Major points-of-interest (i.e. SWEET SPOTS) in this episode include:Where do artificial sweeteners come from? Are they all "chemicals"?What does the WHO's statement on non-nutritive sweeteners mean? What's the context? What are the data origins which spurred this recommendation?Is there evidence that links artificial sweeteners to cancer? What kind of evidence?How does the IARC classify carcinogenicity of substances? What are examples of substances that are "Group 1- Carcinogenic to Humans" vs "Group 2A and 2B- Probably and Possibly Carcinogenic to Humans, respectively"?What is JECFA? How do they classify substances and determine "safe levels" to consume on a daily basis?What are stevia and monk fruit extract? Are they "better" for us since they're "natural"?What is lycasin and why are the reviews of "Sugarfree Haribo Gummi Bears" so hilarious??For more episodes, limited edition merch, or to become a Friend of Your Doctor Friends (and more), follow this link!Also, CHECK OUT AMAZING HEALTH PODCASTS on The Health Podcast Network(For real, this network is AMAZING and has fantastic, evidence-based, honest health information, and we are so happy to partner with them!) Find us at:Website: yourdoctorfriendspodcast.com Email: yourdoctorfriendspodcast@gmail.com Call the DOCLINE on 312-380-5005 and leave us a message. We will listen and maybe even respond/play it on the show! (Disclaimer: we will not answer specific medical questions or offer medical advice. Consult your healthcare professional with any and all personal health questions.) Connect with us:@your_doctor_friends (IG)@JeremyAllandMD (IG, FB, Twitter)@JuliaBrueneMD (IG)@HealthPodNet (IG)
El café puede clasificarse de varias formas. Aquí te presento una clasificación basada en tres aspectos principales: la especie de la planta de café, el método de preparación y el tipo de tostado.1. Especies de la planta de café:Las dos especies más comunes de café son Arabica y Robusta.Arabica: Se considera de mayor calidad y tiene un sabor suave y ligeramente dulce. Representa alrededor del 60% del café producido en todo el mundo.Robusta: Tiene un sabor más fuerte, a menudo descrito como amargo. Contiene más cafeína que el café Arabica.2. Método de preparación:Espresso: Un método de preparación en el que el agua caliente se fuerza a través de café molido finamente a alta presión.Café filtrado o goteado: Este es el método más común en muchos hogares, en el que el agua caliente se vierte sobre café molido y se deja pasar a través de un filtro.Café prensado francés o de émbolo: En este método, el café molido se remoja en agua caliente, luego se presiona con un émbolo para separar el café del grano molido.Café de olla: Un método tradicional mexicano en el que el café se hierve junto con canela y a veces piloncillo (un tipo de azúcar sin refinar).Café turco o griego: Un método en el que el café finamente molido se hierve en una olla pequeña llamada ibrik o cezve.3. Tipo de tostado:Tostado claro: Los granos de café se tuestan solo hasta que alcanzan la "primera grieta". Tienen un sabor más ácido y pueden tener matices de sabor que reflejan su origen.Tostado medio: Los granos se tuestan un poco más, pero no hasta el punto de la "segunda grieta". Tienen un equilibrio de acidez y cuerpo.Tostado oscuro: Los granos se tuestan hasta la "segunda grieta" o más allá. Tienen un sabor fuerte, a menudo con notas de cacao o tostadas, y muy poca acidez.Cada una de estas categorías tiene una gran cantidad de variación, y hay muchas más formas de clasificar y describir el café. Por ejemplo, también se puede clasificar el café por su origen geográfico (como el café colombiano, etíope, etc.), por el método de procesamiento del grano (lavado, natural, honey), y muchos otros factores.¿El café tiene acrilamida y es peligroso?La acrilamida es una sustancia química que puede formarse en algunos alimentos durante procesos de cocción a alta temperatura, como freír, asar y hornear. También puede formarse durante el proceso de tostado del café. La Agencia Internacional de Investigación sobre el Cáncer (IARC) ha clasificado la acrilamida como un "probable carcinógeno humano".Sin embargo, es importante tener en cuenta que el nivel de exposición a la acrilamida a través del café es generalmente bajo en comparación con otros factores de riesgo para el cáncer, como el tabaquismo y el consumo excesivo de alcohol. Además, el café ha sido estudiado por sus potenciales beneficios para la salud, incluyendo una posible reducción en el riesgo de ciertos tipos de cáncer.La mejor guía es la moderación. Si estás preocupado por la acrilamida en el café, puedes hablar con tu médico o un dietista registrado para obtener más información personalizada.
To start the episode, Ali and Asif discuss the controversy surrounding country singer Miranda Lambert chastising concertgoers for taking selfies (0:48). Then, after a brief digression on Dana Carvey's Joe Biden impression, Asif asks Ali about the surprise hit TV show ‘Jury Duty' (10:32). They discuss the background of the show and how it is a combination of ‘The Office' and ‘The Joe Schmo Show'. They then discuss how the show did not make much of a splash when it first debuted, but then gained buzz via TikTok. Ali and Asif then discuss the show's reception and their thoughts on the show. They then discuss the Emmy nominations the show has received, including James Marsden for best supporting actor…for playing himself. Then the guys RE-discuss artificial sweeteners because of a new press-release issued by the WHO on the possible carcinogenic effects of aspartame (37:45). Asif explains how it was a joint press release, highlighting findings about aspartame are released today by the International Agency for Research on Cancer (IARC) and the World Health Organization (WHO) and the Food and Agriculture Organization (FAO) Joint Expert Committee on Food Additives (JECFA). Overall, Asif explains how the IARC found “limited evidence” for carcinogenicity in humans aand classified aspartame as possibly carcinogenic to humans. He then explains that JECFA reaffirmed the acceptable daily intake of 40 mg/kg body weight (ie an adult weighing 70kg would need to consume more than 9–14 cans per day to exceed the acceptable daily intake). Asif clarifies how the agencies' statements are "complementary" in that the two groups work differently, and have a different aim: while IARC flags a potential hazard based on even limited evidence, JECFA assesses the real-life risk. A reminder that the pod will be taking a month off in August. Look for new episodes coming your way on Sept 8, 2023! The opinions expressed are those of the hosts, and do not reflect those of any other organizations. This podcast and website represents the opinions of the hosts. The content here should not be taken as medical advice. The content here is for entertainment and informational purposes only, and because each person is so unique, please consult your healthcare professional for any medical questions. Music courtesy of Wataboi and 8er41 from Pixabay Contact us at doctorvcomedian@gmail.com Follow us on Social media: Twitter: @doctorvcomedian Instagram: doctorvcomedian Show notes: Miranda Lambert has a point: https://www.avclub.com/miranda-lambert-scolds-fans-at-show-backlash-1850651000 How Jury Duty Orchestrated the Trial of a Lifetime: https://www.vulture.com/article/jury-duty-interview.html How 'Jury Duty' completely faked a trial in real courtroom with a narcissistic James Marsden: https://www.usatoday.com/story/entertainment/tv/2023/04/08/jury-duty-feevee-series-fakes-civil-trial-james-marsden/11610571002/ Their Show Flew Under the Radar. TikTok Blew It Up: https://www.nytimes.com/2023/06/08/arts/television/jury-duty-freevee.html How Jury Duty became the surprise comedy breakout of the year: https://www.theguardian.com/tv-and-radio/2023/jul/17/show-jury-duty-amazon-freevee-tiktok What is aspartame and what do the new WHO rulings mean? https://www.reuters.com/business/healthcare-pharmaceuticals/what-is-aspartame-what-do-new-who-rulings-cancer-consumption-mean-2023-07-13/ Opinion: What the WHO aspartame findings mean for your diet: https://www.cnn.com/2023/07/21/opinions/aspartame-sweetener-diet-world-health-organization-branca/index.html Does Aspartame Cause Cancer or Is It Safe to Consume? The Latest Evidence About the Artificial Sweetener: https://time.com/6294701/aspartame-cancer-sweetener-studies/ Ninety-sixth meeting - Joint FAO/WHO Expert Committee on Food Additives (JECFA): https://www.who.int/publications/m/item/ninety-sixth-meeting-joint-fao-who-expert-committee-on-food-additives-(jecfa) IARC Monographs Hazard Classification: https://www.iarc.who.int/wp-content/uploads/2023/06/IARC_MONO_classification_2023_updated.png Carcinogenicity of aspartame, methyleugenol, and isoeugenol: https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(23)00341-8/fulltext Summary of findings of the evaluation of aspartame at the International Agency for Research on Cancer (IARC) Monographs Programme's 134th Meeting, and the Joint FAO/WHO Expert Committee on Food Additives (JECFA) 96th meeting: https://www.who.int/publications/m/item/summary-of-findings-of-the-evaluation-of-aspartame-at-the-international-agency-for-research-on-cancer-(iarc)-monographs-programme-s-134th-meeting--and-the-joint-fao-who-expert-committee-on-food-additives-(jecfa)-96th-meeting
The artificial sweetener aspartame that's widely used in fizzy drinks has just been classified as “possibly” cancer-causing by UN scientists - but there's no cause for alarm.That's the key message from the International Agency for Research on Cancer (IARC), whose assessment of aspartame was carried out on behalf of the World Health Organization (WHO), by an expert panel of nutritional epidemiology and nutritional toxicology scientists.With more details on what these findings mean for all of us, UN News's Daniel Johnson spoke to IARC's Mary Schubauer-Berigan, who's head of the agency's Monographs Programme.
I'm sure you've seen this circulating: the aspartame drama. With the media jumping on the World Health Organization's IARC reclassification of aspartame as "possibly carcinogenic", it's easy to get lost in the chaos. In this episode we're going to go over all things aspartame and discuss why all this media fear mongering does not deserve your mental or emotional energy. If the aspartame drama has been stressing you out, check out this week's diet-culture-debunk of the "spooky" sweetener that's been around since the 60s. Follow Mallory on Instagram by clicking HERE. Apply to Live Unrestricted by clicking HERE. Get on the Waitlist for the Live Unrestricted Practitioner Program by clicking HERE. Do The Free 3 Day Challenge by clicking HERE. Submit Podcast Requests by clicking HERE. Mentioned - Public Summary
The Food and Drug Administration is breaking from the WHO and IARC over the subject of aspartame, which the latter says is “possibly carcinogenic to humans.” While officials and media run PR-cover for one of the most beloved children of the food industry, the issue is obscured with cancer concerns instead of what aspartame is know to do to the body: behavioral and cognitive changes, learning disabilities, seizures, migraines, mood swings, depression, and insomnia. Perhaps this is why the president, who loves his ice cream, one of the main vessels for the neurotoxic sweetener, is so obviously out of his mind. However, the FDA says aspartame safe so long as you consume the recommended amount, an erroneous notion that poison can be healthy, and something that has no consideration for the universal and heavy dosage people get of the substance on a daily basis. Their justification is that it has been studied and is legal in other countries. But it's not just aspartame. Sucralose, in a recent Journal of Toxicology and Environmental Health, Part B, study was fond to cause cellular and DNA damage like food colorings, along with leaky gut syndrome, and thus allergies and inflammation. A recent government study also found that the thousands of PFAS, or forever chemicals, in water without a doubt cause fertility damage, liver damage, hormonal suppression, obesity, and thyroid disease. So if Sucralose can cause DNA damage like food coloring then why is the alternative media not encouraging a boycott of products that contain the sweetener, or colorings, like they are other products? If conspiracy-minded media are so concerned with fluoride calcifying the pineal gland then why are they not concerned with aspartame severing consciouses from the brain and body through neurological damage? Another study from the Journal of Nutrition, and reported on by the American Council on Science and Health, is furthermore promoting the NOVA-4 classification of food, i.e., ultra-processed food-like items, as being at 91% consumption “far healthier than the typical American diet,” although the SAD Diet, or Standard American Diet, is almost exclusively comprised of UPFs. We have finally reached the point of idiocracy. It seems that ASPARTAME BRAIN is responsible.This show is part of the Spreaker Prime Network, if you are interested in advertising on this podcast, contact us at https://www.spreaker.com/show/5328407/advertisement
“Aspartam kommer på WHO's kræftliste.” Det var én af de mange overskrifter, man kunne læse, da det for to uger siden blev afsløret, at Verdenssundhedsorganisationen ville klassificere sødemidlet som ‘muligvis kræftfremkaldende'. Nu er WHO udkommet med deres begrundelse – men siger samtidig, at det ikke er skadeligt at indtage. Og det har – forståeligt nok – skabt både frygt og forvirring. I denne episode gennemgår vi WHO pressemeddelselse samt de forskellige instanser, IARC og JECFA, der er involveret i asapartam-udmeldingen og hvad der egentlig er op og ned på kategoriseringen af aspartam. Vi besvarer ud fra det spørgsmålet: Er der grund til bekymring for aspartam skulle være skadeligt at indtage? Hvis du vil støtte podcasten, så finder du vores sponsor Zetland lige her. Du får to måneders lytbar, reklamefri, dommedagsfri kvalitetsjournalistik for 50 kroner i alt. Det er under en tredjedel af normalprisen: zetland.dk/slutmedforbudt Ting, vi nævner i podcasten: Elsøes Instagram-opslag, der opsummerer hele sagen: https://www.instagram.com/p/CutgghKNoKh/ Pressemeddelelsen fra WHO, der både indeholder konklusionen fra IARC og JECFA: https://www.who.int/news/item/14-07-2023-aspartame-hazard-and-risk-assessment-results-released Artiklen i Lancet, der indeholder IARC's begrundelse for vurderingen af aspartam: https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(23)00341-8/fulltext JECFA's begrundelse for stadig at vurdere, at aspartam er sikkert at indtage: https://www.who.int/publications/m/item/ninety-sixth-meeting-joint-fao-who-expert-committee-on-food-additives-(jecfa) IARC's database over alt, de har har vurderet til dato: https://monographs.iarc.who.int/list-of-classifications/ EFSA's kritik af de italienske aspartam-forsøg, der – som de eneste – konkluderede, at aspartam var kræftfremkaldende i mus: https://www.efsa.europa.eu/en/news/efsa-assesses-new-aspartame-study-and-reconfirms-its-safety
In a new report, the WHO has categorised the artificial sweetener aspartame as “possibly cancerous” to humans. But the groupings used by the IARC, which decides these categories, don't mean the same things we think they do. ThePrint #PureScience, Sandhya Ramesh explains.
Kaugummis, Limo oder Frühstücksflocken - diese Lebensmittel gibt es auch kalorienarm, dank des Süßungsmittels Aspartam. Es wurde schon in den 80er Jahren zugelassen. Doch jetzt hat die WHO Aspartam als "möglicherweise krebserregend" eingestuft. Klingt bedenklich - aber ist es das auch? Darüber haben wir mit dem Ernährungsmediziner Prof. Martin Smollich gesprochen.
This week, Alice looks at media reports around the IARC classification of aspartame as carcinogenic and Mike asks 'why did the chicken cross the road?' Meanwhile, Marsh faces off against crypto scammers and Mike takes a holiday.Tickets for QED are available now. Get yours today!If you want to sign up to speak at SkeptiCamp, you can do that at sitp.online/skepticampTo support Emma running to QED for the Prison Reform Trust, you can do that justgiving.com/page/emmarunstoqed
Cada vez que você vê uma manchete dizendo que algo causa câncer, a IARC (agência Internacional para a pesquisa do câncer) costuma estar envolvida. Bacon, carne vermelha, batatas fritas… A mais recente notícia diz respeito ao aspartame. Mas qual o grau de certeza que temos sobre essas coisas? E qual a magnitude do risco? Hoje vamos conversar sobre a IARC. Para falar sobre esse assunto, temos hoje uma convidada ilustre, Dra. Vanessa Andrade. A Vanessa é pesquisadora e trabalha exatamente nessa área. Estamos no Instagram: Dr. Souto - Sari Fontana Área de membros do blog Ciência Low-Carb: Clique Aqui! Para ser avisado sobre cada novo episódio e receber os links das matérias mencionadas e as referências bibliográficas por e-mail, cadastre-se gratuitamente em https://drsouto.com.br/podcast Para aprender sobre rótulos e como fazer melhores escolhas, acesse https://sarifontana.substack.com/ e cadastre seu e-mail. Você passa a receber conteúdo gratuito, e se quiser apoiar este trabalho, receber conteúdo exclusivo e enviar rótulos para a Sari analisar, faça upgrade para os planos pagos. Conheça também o Podcurso Low-Carb da Teoria à Prática em https://drsouto.com.br/podcurso/
Dr. Chadi Nabhan one of the lead doctors who testified during the Monsanto Roundup trials, and proved that glyphosate containing Roundup Ready weed killer does in fact cause non-Hodgkin's lymphoma, joins the show to talk about the trials and this alarming chemical. Dr. Nabhan gives us a first hand account of what it was like to testify in the trial, and some of the surprising things that happened during his time in court. He also goes over what non-Hodgkin's lymphoma is, and the many other health issues Roundup may be contributing to. We also go over the political aspects of Roundup and glyphosate, what the EPA is actually doing about it, and the future of this dangerous chemical. So many important topics covered on this pervasive and sometimes lethal chemical, so make sure to tune in! On today's podcast, you will learn: How Dr. Nabhan got involved in the Monsanto trials. Fascinating stories about the courtroom and how the trials unfolded. Is glyphosate causing other severe health issues? How Monsanto used employees to ghostwrite medical articles to counter the true findings by IARC. What is non-Hodgkin's lymphoma and the type Mr. Johnson had in the major Dewayne Johnson v. Monsanto Company trials. The fascinating story that lead Dr. Nabhan to write his incredible book Toxic Exposure. What do to if you believe you've had dangerous exposures to glyphosate. The politics of involved around Monsanto and the future of glyphosate. Dr. Chadi Nabhan's Bio: Chadi Nabhan, MD, MBA, is an award-winning hematologist and a medical oncologist who previously hosted an award-winning podcast, Outspoken Oncology, which has now been rebranded to Healthcare Unfiltered – an honest, raw, timely podcast tackling any and all topics in healthcare. No edits and no filters; that is “Healthcare Unfiltered.” Combining his background in clinical care, cancer research, precision medicine, genomics, clinical trials, real-world data, controversies in medicine, and health care advocacy, Dr. Nabhan brings a unique and powerful perspective to current medical events. It's the weekly podcast that you don't want to miss. You can learn more about Dr. Nabhan and his work at www.chadinabhan.com Make sure to pick up his incredible book Toxic Exposure! https://chadinabhan.com/mybooks/ ✨SUBSCRIBE✨ http://bit.ly/38pyo1U
Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein-Ellis, Program Specialist and Director Emeritus for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's host for an episode that will feature Davetrina Seles Gadson. We'll discuss her work involving how brain lesion characteristics may intersect with aphasia recovery, race, and psychosocial factors, as well as issues involving health-related quality of life assessments. Dr. Davetrina Seles Gadson is the first Black-American to graduate with a Ph.D. in Communication Sciences and Disorders from the University of Georgia. She is a neuroscientist and certified speech-language pathologist with expertise in adult neurological rehabilitation and patient-centered outcomes. She currently is Research Faculty, in the Department of Rehabilitation Medicine, at Georgetown University. Dr. Gadson's research focuses on the influence of health disparities in minority stroke survivors with aphasia and the effect of such disparities on brain functioning, aphasia severity, and health-related quality of life. Most rewardingly Dr. Gadson is the co-host of “Brain Friends”, a podcast for neuro nerds and stroke survivors to talk about aphasia advocacy, language recovery, and community. Listener Take-aways In today's episode you will: Learn how health disparities may influence aphasia outcomes and why more research is needed Discover why "Brain Friends" is another podcast you'll want to add to your playlist. Gain practical tips on how to build confidence in intercultural interactions with your clients Hear how health-related quality of life (HRQL) measures can help inform your clinical practice We'd like to recognize Kasey Trebilcock & Amanda Zalucki, students in the Strong Story Lab at CMU, for their assistance with this transcript. Show notes edited for conciseness Ellen Bernstein-Ellis (EBE) EBE: I am so excited to have a fellow podcaster here today. Thank you for being here. And I just listened to the January Brain Friend's episode. It was great. So I hope our listeners will check it out too. I want to also give a shout out to your consumer stakeholder and co-podcaster, Angie Cauthorn, because she was a featured guest on episode 70, in June of 2021, as we recognized Aphasia Awareness Month, and you just spoke with her about aphasia types and aphasia conferences, and you gave a big shout out to CAC and you gave clinical aphasiology conference and you also gave a big shout out to the Aphasia Access Leadership Summit. So really important conferences, I think that stimulate a lot of discussion and values around patient centered care. And your Brain Friends podcast just has a great backstory. So why don't we just share about how that all started? Where's the backstory to that, Davetrina? DAVETRINA SELES GADSON: Thank you so much for having me. This is such an exciting opportunity. So, Brain Friends started with myself and Angie. We were on the National Aphasia Association's Black Aphasia group call and I just loved her energy. She reached out to me after we finished that group call, and we just started talking. Our conversations were so informative, and it just lit this passion and excitement in me. I said, “Hey, can I record some of these, and maybe we do like a podcast?”, and she was totally down for it. It's just been such an innovative and fun way to disseminate science and engage many stakeholders. EBE: I want to thank Darlene Williamson, who's president of the National Aphasia Association for sending me a little more information. You told me about this group, and so I wanted to find out more. She provided this description by Michael Obel-Omia and his wife Carolyn, and I hope I said his name correctly, who provide leadership to this group. And they said that in this group, the Black American Aphasia Conversation group, “provides a place for Black people with aphasia to share their stories, provide support, meditation, and brainstorm ways to advocate and consider policies. We will discuss the unique challenges and gifts we share due to our experiences with disability and race.” I found out that you can reach out to the National Aphasia Association (NAA) for more information and to get on the email list for a meeting notifications. And in fact, I put the registration link in our show notes today. So, sounds like that group has been a meaningful discussion forum for you, too. SELES GADSON: It's been so fun. I share how for me, I've been in the field practicing for a little over 16 years now, and this was my first time being in a room with so many people that look like me. And for many of the survivors on the call, I was one of their first Black SLPs that they had ever met. Just even having that connection, and being able to speak to some of the challenges, and some of the things culturally that we both share has been my outlet, biweekly. EBE: I'm going to make sure we have that link in our show notes. Also, the link to your podcast because I encourage people to listen to Brain Friends, I've really enjoyed it. When you and I were planning for this episode today, you talked about how being part of the National Aphasia Association's Black American Aphasia Group really helped to energize you and the research you were doing, and what a nice integration of life that was. I will want to tell our listeners about one more wonderful thing, and that's the interview you were part of on the ASHA Voices podcast as well as the related article in the ASHA leader, where I learned more about your journey to doing this research. So, as you provided clinical services for a Black client as an outpatient clinician, and this is pre- doctoral research, you recognized that there was a significant gap in the literature around working with African Americans with aphasia. You saw the need to understand the impact of aphasia on identity and motivation in order to best help this particular client. And those are both really important concepts within the Life-Participation Approach to Aphasia (LPAA) framework as well. So, then you shared that you got some important advice from an important mentor. Do you want to share what happened next? SELES GADSON: Definitely. So, one thing that's also unique about that time is that at that point in my career, I had worked in many of the clinical settings. I had done acute care, inpatient rehabilitation, skilled nursing facility, and even worked as a travel SLP traveling throughout the United States. And so, once I had got to that outpatient setting, it was different from any of the other settings because these individuals were home. And often times, they wanted to get back to work. I remember feeling a little discouraged because I wasn't finding research on a lot of functional treatment approaches or functional therapy. In addition, I wasn't finding research on black stroke survivors with aphasia. And so, I mentioned to one of my mentors at the time, Dr. Paul Rao. I said, “what's going on in the field? And I'm not seeing this, and I have this client, and I don't really know what to do.” And he said to me, “Stop complaining kiddo, and go back and get your PhD.” Admittedly, when he said it, it was kind of like, “okay fine, I'll go do it.” I don't think I realized all what it would take. That's what really made me pursue the degree was this notion that I could help facilitate some of that change and bring some of the research that I needed to see. EBE: That is so important. And that story really made me reflect on another story that has really impacted me from a dear colleague, because you experienced in your doctoral work some concerns about doing research on Black Americans because your interest was seen, as it said in I think the ASHA Voices interview or in the Leader, as “personally motivated.” Your story mirrors one that a colleague and dear friend, Nidhi Mahindra, told me as well. During her doctoral research, she was told that while pursuing multicultural interests were worthy, that she may face barriers to getting funding to pursue that line of work. That might be problematic, right? She had to struggle with that. Despite that daunting message, she persisted, and then was funded by ASHA on a grant studying barriers influencing minority clients' access to speech pathology and audiology. Nidhi reminded me how our life experiences can often inform our work in important and valuable ways. Davetrina, you've channeled your experiences into these explicit observations and data that you shared with your doctoral committee. That was a really important part of moving forward. Do you want to share some of the points gathered for that doctoral committee to help support why this research is so important? SELES GADSON: First, I want to thank Nidhi. Hopefully I'm pronouncing her name right, for her perseverance, because it was some of her work that helped me in my dissertation. Being able to cite her just really shows the importance that everybody plays in breaking barriers and pursuing the things that really speak to them. And one of the things that I'll clarify, it was two parts in pleading this case. The first part was that I changed the committee. I think that that was a supportive thing. And then, the second part was that when I prepared all of the research on why I needed to do this work. Some of the research looked at what we knew already with stroke recovery in minoritized groups, which was that Black African Americans were twice as likely to have a recurrent stroke than any other ethnic group and what we were seeing in the aphasia literature for Black Americans, which was the narrative of Black Americans having longer hospital stays, more hospital costs, but poor functional outcomes. And so, it was these two key pieces that I had really gathered. When I went back to the new committee to share and plead my case on why I really wanted to do this research, they had that initial onset of knowing that this research definitely needs to be done. I think that that's what helped it go through. EBE: Wow. I think those are really important reasons. That whole concept of allowing our life experiences to inform our work and to value that. As we start to talk about your research, and I'm really excited to get to share this amazing work you're doing, I thought it might be helpful to define some of the terms that are integral to this research Some of the definitions are a little tough to wrap your arms around because they're not consistent in the literature or are still waiting to develop. Let's start by discussing what you want the listeners to know about the definition for health-related quality of life, or, as we'll call it, HRQL. SELES GADSON: HRQL is operationally defined that it's multi-dimensional. The way I define it a lot in my work is the perception of the individual's ability to lead a fulfilling life in the presence of a chronic disease or disability such as aphasia, but really their perception in five domains. The five domains that I look at in my work are physical, mental, emotional, social communication, and then role, the individual's ability to get back into the activities that they used to be able to do. EBE: Okay, that's really helpful. I think we should also discuss or define patient-reported outcomes or PROs. Sometimes they are also referred to as PROM's, patient-reported outcome measurements. How do they relate to HRQLs? SELES GADSON: Patient-reported outcomes is a health outcome directly reported by the patient without interpretation. Patient-reported outcomes often look at the status of the health condition. The biggest thing about patient-reported outcomes is that it's without the interpretation of the practitioner. So, whatever the patient says is what we're going to take as gold. EBE: Why is it particularly important then to look at HRQOL for Black stroke survivors? SELES GADSON: That's such a great question. And so I want to break it down in two parts. I think the first part is that given the lack of normative data for Black stroke survivors, when we're only looking at clinician-reported outcomes, that's where we get to this bias and the normative bias. I know that there's research out where there are some outcomes to where we're already seeing this five-point difference. And for some research, that five-point difference is considered clinically meaningful. I think that if we're not using these patient-reported reported outcomes, then we put ourselves in a position to contribute to the disparities that we're seeing in standardized assessments. So that's the first answer. The second reason is that we know that nonclinical factors such as physician-race concordance drive up to 80% of what we're seeing in poor functional outcomes in minoritized groups. If we're not asking the person, then we're not able to really understand the things that they want to do, and we're already coming in with this majority type attitude which could influence one's participation in therapy. The last thing that I think is most important, whether you're Black, white, purple, whatever, is that we have these insurance demands that sometimes may not allow us to get to all the things that we may see from an impairment base. By using the patient-reported outcomes, we are helping structure therapy in ways that matter most to the patient. EBE: Well, that reminds me of this amazing quote that I was hoping I could work in today. I circled it in big yellow pen when I first read through your research. You said that it's really important because, due to the lower HRQL that we find in individuals with aphasia, it's “imperative that the development of a treatment plan incorporates what the patient prioritizes. And it's imperative that clinicians have a way to measure these subjective attributes to make a meaningful impact on care.” That's what we want to do. SELES GADSON: So important, because I think what we have to realize is that part of our role as the practitioners providing this skilled intervention, is really helping the individual get back to what they want to do. And I think that if we're not asking them what they want to do, then we're not really able to structure therapy in matters that mean the most to them, but also help them to start to recognize that as part of this identity with aphasia, that there's this new normal for them. Sometimes, individuals are going to rate themselves based off of what they used to be able to do. But if they know that one of their goals was to be able to talk on the phone, or to play bridge with their friends, and we worked on that in therapy, they're now able to look and see, before I scored my telephone confidence at a 50. Now I feel like I'm at a 90, and so sometimes that own self-recognition can support motivation, and can even support therapy, once insurance dollars run out. EBE: I really appreciated doing this deeper dive into PROs as I read through some of your research. And one of the resources I came across was a really interesting table that talked about six categories of PROs. And I'll put a link in the show notes to a 2015 book by Cella, Hahn, Jensen and colleagues called “Patient-Reported Outcomes and Performance Measurement.” (They list six different kinds of PROs in a helpful table.) But the main category that your work is utilizing is actually these HRQL measures. You've been stating why it's so important. HRQL PROs help to frame diagnostics and treatment because you're trying to prioritize what the patient wants and needs-- what they're expressing. SELES GADSON: Right, exactly. I think that one of the things that it's really important for practitioners to understand, is that these things are mandated by what we see in our scope of practice. When I say mandated, I mean we are called to reduce the cost of care by designing and implementing treatment that focuses on helping the individual. If we're not asking the individual what they want to get back to, then I think that we're putting ourself at a position that makes it more challenging to serve in that way. EBE: One of the things we like to do on this podcast is to provide resources that will help clinicians think differently or do something differently tomorrow as they meet face-to-face with their clients. And one of the things I thought we'd put in our show notes is a link to the PROMIS website, because that was something you've used in your research. Do you want to explain a little bit about that website? SELES GADSON: One of the things that I like about the PROMIS website is that it has a list of health outcomes available to use for a range of individuals-- for pediatrics, for adults. I like that it's free, most of them, and I think that it's a good place to start. Some of the outcomes on that website are also even appropriate for in acute care, meaning that they may not take a long time to administer. And so, I think that that's a good place to start. EBE: Well, thank you. And I want to move right into this wonderful paper where you are co-author with Wesley, van der Stelt, Lacey, DeMarco, Snider, & Turkeltaub, that looked at how brain lesion location interacts with HRQL. Can you share a couple key takeaways from that paper? I hope you'll highlight the one related to depression and HRQL. We're having a lot of research right now around the emotional impact of aphasia and how that will impact recovery outcomes as well. So, tell us a little bit more about that work. SELES GADSON: We looked at the domains of health-related quality of life associated with specific deficits and lesion locations in chronic aphasia. We examined the relationship between HRQL using the Stroke and Aphasia Quality of Life Scale by Hilari and her colleagues, as well as a depression scale, and different impairment-based measures---our battery that we used here. What we found was that language production and depression predicted communication HRQL, meaning that those individuals that reported lower communication HRQL also had a significant depression associated with it. We did lesion symptom mapping in this study. Basically, what we were looking at is to see if HRQL mapped on to discrete areas of the brain. We found that individuals that reported lower psychosocial HRQL had inferior frontal and anterior insula lesions; where individuals who reported lower physical HRQL had lesions in the basal ganglia. This confirmed for us that even though HRQL is this subjective perception, we were seeing it map on to these very specific areas in the brain that also predicted some of the impairment measures that we know of. EBE: That can get us to start thinking about if we have patients with these types of lesions, maybe to be more on the alert for depression. I think that's one point you made. But you also mentioned another important takeaway in the study about the impact of depression on HRQL related to the training of SLPs. This all ties together. What are your thoughts there? SELES GADSON: I think that when we are recognizing that individuals with aphasia are experiencing a new normal, and I think that the research has been very clear on understanding that depression does relate to and contribute to one's communication. I think that there is an opportunity for speech-language pathologists to have more counseling classes. And again, make sure that we're tapping into what the patient wants to do in order to hopefully help mitigate some of those feelings of depression. EBE: I really endorse building those counseling skills in our graduate programs for our students, so they go out feeling more confident and more skilled and knowing that that is going to be an ongoing journey as a speech-language pathologist to build that skill set. SELES GADSON: And shameless plug, I think our episode six of Brain Friends is a mental health episode. I have one of my good girlfriend colleagues there who is a counseling psychologist. She shares with us helping skills for the practitioner, and we share on that episode10 skills that you can do as a clinician to support the person with aphasia. EBE: Thank you for sharing that. That's really important. And again, the link to Brain Friends will be in our show notes. Let's take a moment and talk about how you connect this finding about depression to the role of social communication, because you said it was those scores that were down in your measure. SELES GADSON: With that particular study or overall? EBE: However you'd like to discuss it. I'm opening that door to you. SELES GADSON: One of the things that we were seeing is that individuals were reporting the depression within this Communication HRQL domain. So even though we didn't dive into it too deep in this study, it was more of the correlation and recognizing that individuals that were reporting this higher level of depression, also have this higher level, or this lower report of communication HRQL, making those links specifically. I do have something that I'm working on right now, that will completely answer that question a little bit more solidly. I don't want to speak too much on this, so stay tuned. EBE: Absolutely staying tuned, there's no question. You also had another article that I found intriguing-- An article with your coauthors, Wallace, Young, Vail, and Finn, a 2021 article that examined the relationship between HRQL, perceived social support, and social network size in Black Americans with aphasia. And that paper highlights that there's been little research exploring HRQL in Black Americans. Of the five factors that comprise HRQL, why did you decide to focus on social functioning? And specifically social support and social network in this study? SELES GADSON: Well, that really came from the literature. One of the things that the literature said is that we knew that social HRQL contributed in some way, but we weren't sure what way. And we weren't sure what pieces of social functioning contributed. My apologies to the researcher who said it, but it set me up perfect for my dissertation work to say, “this is why I'm looking at social functioning in these two specific pieces,” because we didn't know. Was it social participation? Was it social network? Was it social support? That was one of the reasons why I wanted to pull out those two specific pieces. The other thing that was really important about this work was that it was the first study that really looked at what HRQL looked like in Black stroke survivors. We didn't know any of that. And so for me, it was really important to compare Black stroke survivors to normal aging Black individuals because I feel that for us to really get baseline understanding of what some of these factors are and how individuals respond in recovery, we have to compare them to their norm, or to other members in their community that look like them before comparing between Black and white or any other ethnic groups. This study is where we found that in terms of HRQL, the main difference between stroke survivors with and without aphasia and in our normal aging individuals, was that communication was the impairment. And then, with the social network and social support, we weren't seeing a difference between this homogenous group of Black people in those areas. EBE: That takes me to my next question, your research noted that the Black survivors with and without aphasia, have smaller social networks compared to white stroke survivors. That's the data that we have based on that social network data. Even though you weren't trying to compare in this study, per se, you still made sense of that finding-- trying to make sure that we don't make assumptions, and instead look at different factors that could be at play. How did you make sense of that finding, the smaller network? SELES GADSON: It was two things that allowed us to make sense of that finding. One was recognizing that in both groups, the stroke survivors with aphasia and our normal aging individuals, that because they were age matched, it could have been a factor of age--meaning that the individuals receiving the support quality and then their network, everyone was kind of in the same age group, and so, it was more of a factor of time of life versus actual culture. But then a lot of that came through in some of the anecdotal reports, and things that we even circled on the scale that we used--we use the Lubben Social Network Scale. With some of those questions, one might be how many people do you feel comfortable sharing personal details with? And often times, we got this report of “just my husband”, or “only God”. And so, we were seeing that some of this really related to the traditional and cultural values in Black Americans, where you're not going to share a lot of stuff with a lot of people. You have your set group, your small network. And that's okay. That doesn't mean that you're isolated. EBE: I think another point you make, and maybe even thinking back to the ASHA Voices Podcast, why it's particularly important to target social communication. That is yet another life participation core concept. Do you want to speak to that for a moment? SELES GADSON: I think the thing that we have to realize with social communication is that individuals, especially within the black community, they are social, they want to talk, they want to get back to doing and interacting with their community. And so, one of the things that that looks like is maybe being able to participate again in Bible study or being able to stand up and read a scripture. And the only way that you know that, is by asking them that on a patient-reported outcome. I think that that's where that social communication piece is coming in. One of the things that I'm seeing with the Black aphasia group is that moment, that hour, where everyone is together, it's amazing. It's them using social communication. You spoke about how I said that that energized my research, and that was why--because I was on this call, and they were speaking about these things, that sometimes I feel like I have to explain to the powers that be why social communication or the LPAA approach is important. But here I was talking with all of these survivors, and they were telling me, I want to be able to communicate, I want to be able to do these things. It just really confirmed for me that this type of research, we were on the right path. EBE: Right. And this is my chance for a “shameless plug” because of my life work, and that is just the power of groups. The power of groups is amazing. SELES GADSON: You know, your life work and... EBE: Well, we don't want to go there, this episode is about you. SELES GADSON: Okay. I'm telling you; I'll get into just how influential your work has been, even when I was working as a practitioner and doing group therapy, it was your work and your research that I was going to. EBE: Well, I had the honor of getting to work with Dr. Roberta Elman, and starting the Aphasia Center of California and doing that initial research, that has been such a gift to me, so, but thank you, back to your work now. That's a great transition, because I'm going to bring us to your 2022 study, looking at how aphasia severity is modulated by race and lesion size in chronic survivors. That was an amazing study. I'm going to read another quote here from that study. And that is, “understanding the origin of disparities in aphasia outcomes is critical to any efforts to promote health equity among stroke survivors with aphasia.” You said this work led you to an “Aha!” moment. And I'd love for you to share more about that moment, and about this study. SELES GADSON: Yes, this was one of my babies, I would say it was definitely a labor of love. And it's been well received. One of the things that led us to this study was that we were already aware of what the research was saying, in regards to the narrative of Black stroke survivors having these lower scores, they were having poor functional outcomes, longer hospital stays. I really wanted to understand what components neurologically, were playing into that. The research has shown that Black Americans often may have a larger stroke due to a myriad of factors-- delayed hospital arrival, not being able to receive TPA. But I wanted to know what factors neurologically were contributing to what we were seeing, not only in this baseline difference that we were seeing, but what was the bigger picture essentially. What we found was that when we looked at race and lesion size, when we did an interaction of race and lesion size, that Black and white survivors with small lesions performed similarly. But larger strokes resulted in more severe aphasia for Black people, than white people. And that was something that we didn't quite understand, because if you think about it, the larger the lesion, the poorer your aphasia should be. But in this case, the larger the lesion, the white stroke survivors were performing better and so we offered two reasons for that. One was the potential assessment bias-- that maybe with the larger stroke, there was this code-switching element that the Black stroke survivors just weren't able to do. And we were seeing that in the larger strokes, and it wasn't being picked up in the smaller strokes. Then the other was the disparity that I had mentioned earlier, which is that access to rehabilitation. It might have been more evident-- we were seeing some of those disparities in the larger strokes. We know that individuals that come from higher earning SES groups have greater access to rehabilitation services like speech and language. That was our other reason, that we were wondering if that's why we were seeing that outcome. EBE: This reminds me some of the research that Dr. Charles Ellis has been doing. I attended his keynote speech at the IARC conference in 2022 that talked about understanding what is happening upstream, because it's going to impact what's happening downstream. In terms of health disparities, it's going to have an impact. I think your research supports that. We need to learn more about it and do the research you're doing. As you reflect on your findings across these amazing studies, this research that you've been doing, can you offer to our listeners some tips on how to have more confidence with intercultural contact? SELES GADSON: That's a great question. I think the first thing that that you have to do is put yourself in places where you are connecting with people that don't look like you. EBE: I agree. And that can be hard and challenging to do. SELES GADSON: It can be, but one of the things that I say is that it goes back to some of the things that Dr. Ellis has talked about, which is being intentional. That might mean going to a different side of the neighborhood to support a Black owned business, and being within that space, to feel how it feels to be around different cultures. The other thing that I think is really important, and it comes out of literature that looks at reducing racial bias in health care, which is to avoid stereotype suppression. So oftentimes, people may be thinking something and they don't want to share it, or they try to suppress it. And the reason why that's negative is because stereotype is a cognitive organization strategy that we use. And where it becomes negative is that if you're having these stereotype ideas, or you're just not sure, if you're not able to express them within a space that you feel comfortable with, then you suppress them. And then it kind of comes out in therapy. And so, I think that those are two huge things. And then the last thing that I would say is that it's really important to build partnerships. And so, building partnerships, either with local churches, within the university area, or just seeing how you can serve in order to help create some of that confidence. But you have to put yourself out there and not wait until therapy day. EBE: Wow, thank you for those tips. And one of them reminded me of something, a tip that a local educator suggested that, even if you don't feel like you're in an environment where your everyday social context might put you with people who look different from you, that you can still listen to other voices by listening to podcasts, sign up for podcasts, sign up for Twitter feeds of people with different voices, so you can start being present to that conversation. So that was something that I have found useful and really good advice as well. SELES GADSON: So true. The other thing that I did, even someone who identifies as a Black American when I was doing my dissertation work, and previously before some other things in my career, I noticed that perspective taking was a huge piece--putting myself or imagining myself in the individual's shoes. And so, for me, that meant that I went to Black museums and exposed myself to different cultural experiences. I wasn't going into some of these spaces, whether it was collecting data or even working with individuals from other earning communities, with some type of privilege. So even in that sense, I wanted to make sure that I checked my privilege as well by doing that perspective taking. EBE: Thank you,. And this discussion could keep going, but I know our time is getting tight here. This whole effort that you put in your research of looking at HRQL measures reminds me of some of the work that I've really admired by Hilari and you had a wonderful story you could share about her, your interaction and your use of her work. Would you like to share that quickly? SELES GADSON: Oh, she's so awesome. I was sharing how when I first was diving into this literature, her work was one of the pieces that I found, the Stroke and Aphasia Quality of Life Scale. I reached out to her and she shared this scale. And a couple of years later, I attended the International Aphasia Rehabilitation Conference in London. And she sat down with me. I asked her if she had any time, if we could just talk, and she was so welcoming. We sat down, and she might not even remember this, but even in that moment of us being able to talk about these things that we were both so passionate about, she just really spoke to me and encouraged me. And it's so funny, because now as I publish and do different things, my mom always says, “you gonna be just like Dr. Hilari.” EBE: Let's just do a shout out for mentorship, for people who take the time, and feel committed and passionate. Again, we're using that word again today, passionate, to support the new voices that are coming into the field. So that's the gift of mentorship. And in this whole discussion, you and I also talked about how important it is to be inclusive, and we talked about how HRQL measures sometimes are harder to use with people with severe aphasia and how they can get excluded from research. It's hard enough to get people with aphasia into the research, right? There's work by Shiggins and her colleagues looking at how often people with aphasia are excluded. But you made a good point about ways that we can include people with more severe aphasia. Do you want to mention that? SELES GADSON: I think one of the things that we have at our fingertips, and we know just from our training, is to use different visual cues to support those individuals that might have more severe aphasia. One of the things that we highlighted in the 2020 paper looking at the psychometric properties of quality of these patient reported outcomes, was that there are certain assessments that are perfect for individuals with severe aphasia, assessments like the Assessment for Living with Aphasia (ALA), because it has the pictures available and it has simple language. Just recognizing that even by using some of these compensation tools, whether it's pictures or modifying the language, we can still get the individual's perspective of what they want in therapy just by using some of these modifications. EBE: This reminds me, I can put one more link and resource into the show notes, because the Center for Research Excellence in Aphasia offers this wonderful speaker series. And there was just an excellent recent session by Dr. Shiggins on including people with aphasia in research. So, I'll put that link in. I want everybody to listen to that presentation. And finally, as our closing question for today, Davetrina, if you had to pick only one thing we need to achieve urgently as a community of providers, of professionals, what would that one thing be? SELES GADSON: I think we have to start using patient-reported outcomes. I think that if you were doing a clinician-reported outcome to assess the impairment, paired with that has to be some level of patient-reported outcome that will give you insight into what the patient wants to do. It's no longer optional. I think that we have to make it a paired thing with our clinician-reported outcome, is getting the perspective of the patient. EBE: I so agree with you, thank you. Thank you for this wonderful interview today. I really, really appreciate it. SELES GADSON: Thank you. EBE: And I want to thank our listeners for listening today. For references and resources mentioned in today's show, please see our show notes. They're available on our website, www.aphasiaaccess.org. And there, you can also become a member of this organization. Browse our growing library of materials and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Ellen Bernstein Ellis and thank you again for your ongoing support of aphasia access. References and Resources Brain Friends Podcast: https://www.aphasia.org/stories/brain-friends-a-podcast-for-people-with-aphasia/ https://www.facebook.com/groups/1563389920801117 https://open.spotify.com/show/5xgkrhUhEIzJgxpRXzNpBH Centers for Disease Control and Prevention (CDC) HRQL website: https://www.cdc.gov/hrqol/concept.htm National Aphasia Association Black American Conversation group registration: The Black American Aphasia Conversation Group meets through Zoom every other Monday at 4:00pm EST (1:00pm PST) . If you are interested in joining this group, please complete the form https://docs.google.com/forms/d/e/1FAIpQLSfJN9VWjrujhebT8Z48bqDZePOHYotipFC34S8T0X8_o8rG-g/viewform Patient Reported Outcome Measurement System (PROMIS) https://www.promishealth.org/57461-2/ Cella, D., Hahn, E. A., Jensen, S. E., Butt, Z., Nowinski, C. J., Rothrock, N., & Lohr, K. N. (2015). Patient-reported outcomes in performance measurement. . Research Triangle Park (NC): RTI Press; 2015 Sep. Publication No.: RTI-BK-0014-1509ISBN-13: 978-1-934831-14-4 https://www.ncbi.nlm.nih.gov/books/NBK424378/ Gadson, D. S., Wallace, G., Young, H. N., Vail, C., & Finn, P. (2022). The relationship between health-related quality of life, perceived social support, and social network size in African Americans with aphasia: a cross-sectional study. Topics in Stroke Rehabilitation, 29(3), 230-239. Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728. Gadson, D. S. (2020). Health-related quality of life, social support, and social networks in African-American stroke survivors with and without aphasia. Journal of Stroke and Cerebrovascular Diseases, 29(5), 104728. Gadson, D. S., Wesley, D. B., van der Stelt, C. M., Lacey, E., DeMarco, A. T., Snider, S. F., & Turkeltaub, P. E. (2022). Aphasia severity is modulated by race and lesion size in chronic survivors: A retrospective study. Journal of Communication Disorders, 100, 106270 Gray, J. D. (2022). Transcript: ASHA Voices: Confronting Health Care Disparities. Leader Live. https://leader.pubs.asha.org/do/10.1044/2021-0902-transcript-disparities-panel-2022 Law, B. M. (2021). SLP Pioneers Research on Aphasia Rehab for African Americans. Leader Live https://leader.pubs.asha.org/do/10.1044/leader.FTR4.26092021.58 Lubben, J., Gironda, M., & Lee, A. (2002). Refinements to the Lubben social network scale: The LSNS-R. The Behavioral Measurement Letter, 7(2), 2-11. Shiggins, C., Ryan, B., O'Halloran, R., Power, E., Bernhardt, J., Lindley, R. I., ... & Rose, M. L. (2022). Towards the consistent inclusion of people with aphasia in stroke research irrespective of discipline. Archives of Physical Medicine and Rehabilitation, 103(11), 2256-2263. Shiggins, C. (2023) The road less travelled: Charting a path towards the consistent inclusion of people with aphasia in stroke research. Aphasia CRE Seminar Series #36 (Video) https://www.youtube.com/watch?v=sqVfn4XMHho
The Arctic Report Card is an annual report led by the National Oceanic and Atmospheric Administration(NOAA). The efforts of scientists and climate specialists to create this robust scientific report every year is impressive. The amount of work contributed to this scientific document is extremely important in documenting climate change in the Arctic, which is warming at an alarming rate. Today's episode is a conversation with Rick Thoman, a climate specialist at IARC's Alaska Center for Climate Assessment and Policy (ACCAP). Rick is a contributor and editor of the Arctic Report Card and was also awarded NOAA Distinguished Career Award for Professional Achievement in 2020. Rick was honored after a 30 plus year career with the National Weather Service for continued efforts to improve climate services in Alaska and for outstanding outreach efforts working with the Alaska Native community.The Report Card is intended for a wide audience, including scientists, teachers, students, decision-makers and the general public interested in the Arctic environment and science. It is encouraged that the Report Card to be utilized and studied, as the scientific community has created it to be an easily read report for the general population to better understand the complexities of the warming Arctic.Here are the links to the 2022 Arctic Report Card and NOAA website:https://arctic.noaa.gov/Report-Card/Report-Card-2022https://www.arctic.noaa.govYou can visit my website for links to other episodes and see aerial photography of South Central Alaska at:https://www.katiewritergallery.comThanks for tuning in to All Cooped Up Alaska!Katie WriterJournalist/Pilot/Photographerktphotowork@gmail.com
Welcome to this edition of Aphasia Access Conversations, a series of conversations about topics in aphasia that focus on the LPAA model. My name is Janet Patterson, and I am Research Speech-Language Pathologist at the VA Northern California Health Care System in Martinez CA. These Show Notes follow the conversation between Dr. Chaleece Sandberg and myself, but are not an exact transcript of the conversation. Dr. Chaleece Sandberg is Associate Professor in the Department of Communication Sciences and Disorders in the College of Health and Human Development at Penn State University. She directs the Semantics, Aphasia, and Neural Dynamics Laboratory (SANDLab), which focuses on finding ways of optimizing language therapy for adult language disorders, with a primary interest in aphasia. Specifically, work in the SANDLab explores the neuroplastic processes that take place during successful therapy and how to enhance these processes. Additionally, SandLab work explores how cortical reorganization due to aging affects the way we interpret the cortical reorganization that results from language therapy. In today's episode you will hear about: the importance of impairment-based treatment in a person-centered approach to aphasia therapy, the role of linguistic complexity in selecting treatment stimuli and supporting generalization, how speech-language pathologists can add aspects of counseling to treatment activities. Share Dr. Janet Patterson: Welcome to this edition of Aphasia Access Conversations, a series of conversations about community aphasia programs that follow the LPAA model. My name is Janet Patterson, and I am a Research Speech-Language Pathologist at the VA Northern California Health Care System in Martinez, California. Today, I am delighted to be speaking with my friend and research colleague, Dr. Chaleece Sandberg. Dr. Sandberg is associate professor in the Department of Communication Sciences and Disorders in the College of Health and Human Development at Penn State University. At Penn State, she directs the SANDLab, that is the Semantics, Aphasia and Neural Dynamics Laboratory. Efforts in the SANDLab are aimed at finding ways of optimizing language therapy for adults with language disorders, with a primary interest in aphasia. Specifically, the lab explores the neuroplastic processes that take place during successful therapy and how to enhance these processes. Additionally, the lab work explores how cortical reorganization due to aging affects the way we interpret the cortical reorganization that results from language therapy. In 2022, Chaleece was named a Distinguished Scholar USA by the Tavistock Trust for Aphasia, UK. The Tavistock Trust aims to help improve the quality of life for those with aphasia, their families, and care partners by addressing research capacity related to quality-of-life issues in aphasia. Congratulations on this well-deserved honor, Chaleece. Aphasia Access collaborates with the Tavistock Trust for Aphasia in selecting the awardees and is pleased to have the opportunity to discuss their work and the influence of the Tavistock award. Welcome Chaleece, to Aphasia Access Conversations, Dr. Chaleece Sandberg: Thank you so much for such a lovely introduction. I'm so glad to be here doing this with you and I'm so thankful to the Tavistock Trust for this recognition. Janet: Chaleece, as we said, you were named a Tavistock Trust Distinguished Scholar USA for 2022 and join a talented and dedicated group of individuals. How has the Tavistock award influenced your work, both your clinical and your research efforts in aphasia. Chaleece: So, first of all, I am so incredibly honored to be recognized as belonging to such an amazing group of scholars. These are definitely people that I admire, and I look up to and I want to be more like, and so receiving this award is not only supporting my ability to push some ideas forward that I've been having, but it's also giving me more confidence to go all in and make quality of life, an even larger focus in my teaching and research. Janet: That is terrific to hear, because I think quality of life is so very important for all of us. We sometimes forget that idea when we get focused on our treatment or specific treatment protocol. In preparing for this interview Chaleece, I read several of your publications, including your work in treatment for lexical retrieval, and the Theory of Complexity. Would you briefly describe this theory and your work in this area? Chaleece: I'd love to. The Complexity Account of Treatment Efficacy was introduced by Cindy Thompson, who is actually my research grandma, Lewis Shapiro and Swathi Kiran, who was my Ph.D. mentor. What they were finding was that while they were doing the Treatment of Underlying Forms, which is a treatment that supports sentence processing, when you train more complex sentence structures, like object class, something like, “It was the porcupine who the beaver hit”, right, you're going to get generalization to not only other object clefts, but simpler structures, like WH questions, so something like, “Who did the beaver hit?” Using this logic, Swathi started exploring the effects of semantically based therapies for word retrieval and found that training atypical words in a category promotes generalization to typical words in that category. The idea is that you're basically training this wider breadth of information that applies to more items. In the case of typicality, you're training semantic features that are really characteristic of these atypical items, like that “a penguin doesn't fly but swims”, and that you're also training these really typical features that apply to everything in that category, like, “a penguin lays eggs like most other birds”. In my work, I've extended this logic to training abstract words. Now with abstract words the mechanism of generalization is slightly different. Rather than words sharing semantic features, they share associations. So, we train words in thematic categories, like “hospital” and “courthouse”, where there are these strong associative links between abstract words like “diagnosis”, and concrete words like “doctor”. The reason that it's more beneficial to train abstract words rather than concrete words is because they have a wider range of these associative links, so they can activate more concepts when you get that spreading activation within the semantic system. We've started calling it Abstract Semantic Associative Network Training for that reason, or it's AbSANT for short. Janet: I think that is so fascinating. It makes sense because you're looking at a way to optimize therapy, which is what the SANDLab is all about. How can we, from a theoretical perspective and with data to support what we're doing, how can we be as efficient as possible in achieving the outcome that we would like to have for a person with aphasia? I think it's a perfect example of theoretically based treatment. That leads me though, to the next question to say, I love your research. And I love that it's taken however many years and starting with grandma, Cindy and then Swathi, and now you. That's a lot of effort and a lot of work that clinicians don't have. The theory is so powerful, so I'd like to ask you, what are your thoughts on actions that clinicians might take to easily incorporate these treatment principles, or this treatment, into their clinical activities. Chaleece: I've tried to really consider clinicians and keep clinicians in mind when I've been thinking about AbSANT. One thing that I've done is, I've made absent available for free on my lab website (SANDLab). There's also a tutorial published in Perspectives of the ASHA Special Interest Groups. And the idea is that that's kind of an easy to go to for clinicians. And even though we've only actually used a couple of categories in our research, so we focused on courthouse and hospital, we actually did norming on I think it's 17 categories, thematic categories, like football and holidays. And all of those words are available on the website, I also don't see why you can't create your own categories that are going to be personally relevant for your client. One of our AbSANT clients that we had in our research study, after they were done, the husband wanted to continue to work with his wife on words for the holidays, actually. And so we talked about it, and he came up with some words in the category Christmas, that would be good targets, and they went off and used it. And it helped. They were very happy. Janet: Kudos to you, Chaleece, for doing it like this. What you just described, about a person sitting in therapy and using your words and what you had created, and then going off and creating their own with your assistance, that is exactly what I think should be happening, as we think about therapy. That feeds quality of life, that feeds a person's ability to move back into whatever they want their life to be. Kudos to you for making this freely available to clinicians. They don't have to go digging into research papers or into journals to find and to piece together your work, it's there on your website. By the way, the link to your lab and this information will appear in the Show Notes that accompany this recording. So, thank you for that. I appreciate it. And I know clinicians will as well, Chaleece: I understand being pressed for time, and I did want to make this as easy and accessible as I could Janet: Chaleece, at the heart of your work in aphasia, as we just mentioned a few minutes ago has been optimizing treatment. One of your research interests supporting this direction, has been examining the neurological mechanisms that underlie behavioral change following treatment. Conducting research on this topic is challenging for many, many reasons. Yet, I think it's very important to aphasiology as we seek to understand the elements of a treatment protocol, and how the brain changes in response to stimulation. So, with that large question and that large research area, what have you learned from your work in this area? Chaleece: You are right, it is a very challenging area to work in. One thing that is heartening is that my work seems to agree with some of the heavy hitters out there who are doing this work on a much larger scale. I think that in order to really get at the root of these questions, we do need these really large-scale studies across different sites that are going to be able to gather enough data so that we understand fully what's happening. But basically, it seems like no matter how chronic the person is, there is neuroplasticity related to treatment gains. We still don't really have a definitive answer regarding things like which hemisphere is better? Or is increased or decreased activation better? But it's looking like the answer is actually going to be quite nuanced and related to individual variability, which again, speaks to this idea that the more data the better. Luckily, there is a working group in the Collaboration of Aphasia Trialists, or CATS, that's working on this question. I am a part of that group and very honored to be a part of that group and contributing to this work. I do have some results from a pilot study that I did as a doc student. We found that left inferior frontal gyrus pars triangularis, so basically, Broca's Area appeared to be especially important for the AbSANT outcomes. We also found that when we saw generalization from the abstract to the concrete words, that areas that are normally responsible for concrete word retrieval, were being activated after therapy more so than they were before therapy. That's some nice evidence that generalization is actually affecting areas of the brain that are responsible for those items that are being generalized to. I have yet to analyze the data from my current study but stay tuned. Janet: Oh, we will. I think that there's a large body of data, as you said, from other people who've done larger studies, and lots of people have been focused on this question for a while, and you are as well. It's a bit daunting for clinicians, again, to think about how to wrap your head around the idea and the evidence. We all believe that the brain is changing, but to wrap your head around the evidence that says, “Well, how is this happening?” and, “What can I do that will facilitate it happening a little bit more quickly or a little bit more thoroughly?” So, I realize I'm asking you a speculative question that's sort of out there, but I'm going to ask it anyway. What are some of the ideas from your work that clinicians may find useful to think about on Monday morning, when they walk in to interact with their clients who have aphasia, and their family members and care partners. Chaleece: I think one of the things that I really would like to underline is don't be afraid to challenge your clients. We actually learn better when we're challenged, and learning is what's going to cause those changes in the brain. Probably the most important thing that I would like for clinicians to take away from my AbSANT work is that it's worthwhile and not impossible to work on abstract word retrieval using a semantically based approach. Abstract words are so important for natural conversation. Training them seems to really help support retrieval of concrete words as well, and so you get more bang for your buck. I found that people, especially those with a little bit milder aphasia who are up for the challenge, really enjoy the metalinguistic discussion, and the chance to defend these really strong opinions that people have about the personal meanings of abstract words. And, again, the most important thing in terms of l the neural imaging in the neuroplasticity is that the brain always has the ability to change. I realize that our clients are later in life, they've had a stroke, maybe they're in the chronic phase of recovery, and they can still show neuroplastic changes. One of my highest achievers, in my study, when I was a doctoral student, both behaviorally and neurophysiologically, one of the people who showed the most neurological changes was 20 years post stroke. Janet: That's amazing. When you talk about abstract language, it makes me think that so much of what we do, or at least as I look back on a lot of the treatments that we do, single words or visual nouns or concrete nouns, very simple, sometimes we say functional words. But then you step aside and listen to people talk and so much of what people's conversation contains is nonliteral words and abstract words. We don't talk like the words that we're using in therapy, and it makes perfect sense then, the way you're approaching this challenge of aphasia, to try to make your work more like what people with aphasia are going to experience during conversation. It's a big problem and a big challenge, but I think you're up to it, and I'm looking forward to seeing some of more of your work on AbSANT. Especially since it's such a challenging area of work. I appreciate you giving us specific suggestions of things that we might do Monday morning when we see our patients. So, this is not just a conversation and it's not just another academic lecture in how we think about treatment, but it has some very important real world applications for us. Thanks so much for that piece. I'd like to switch for a few minutes, Chaleece, and talk to you about your interest and work in bilingual aphasia. How did you become interested in this line of work? And more importantly, what have you learned from your work in this area. Chaleece: So, I've always been interested in learning other languages. I have actually attempted to learn a few languages and have not been that successful. But one thing that I realized while trying to learn these other languages is that I was really intrigued by the way languages work. As you're learning another language, you start to really kind of put the pieces together and see kind of under the hood of what's actually happening. And so, I got my undergraduate degree in linguistics, and I think that this kind of fascination with how languages work also partly fueled my interest in aphasia in the first place. I remember sitting in my language in the brain class, and a light bulb went off, I was like, “Oh, my gosh, this is exactly what I want to study!” This idea that this full language system that was completely developed, all of a sudden can get destroyed by damage to particular areas. And so, you know, that kind of set the stage for me wanting to study aphasia. And then when I got into Swathi's lab and she was doing bilingual research, I was so excited. I was like, “Oh, I am totally on board with this”. So, I volunteered for all the bilingual studies that I could, actually not speaking any other languages myself, but realized that I can still research other languages, even if I don't speak them. That was kind of an “aha” moment for me, which was very nice. During my Ph.D., I got to know Theresa Gray, who was a fellow doc student, and she and I became really good friends. After graduation, we immediately began a collaboration. This was good news for me because I had gotten a job at Penn State, and we're in Central PA and there is not a huge bilingual population there. But there is an excellent center for language science at Penn State started by Judy Cole, Janet van Hell and Carol Miller. That has really helped to support my efforts in understanding bilingualism in general, and bilingual aphasia. So, the work that Teresa and I have done together has actually been really focused on getting culturally and linguistically appropriate materials out to bilingual clinicians. That was where we saw that we could do kind of the most good in this area. But along the way, we found some really interesting patterns related to cross language generalization and language dominance and cognitive control. We've also had some really interesting insights from our students who've been working on these projects who have just made comments about the adequacy of the assessments that we're using. And so we're really starting to think about how that's going to affect what we know about people's languages that they speak as we're trying to figure out, you know, what's going on, after a stroke with these different languages. And it also just kind of brings to the surface, that there are so many limiting factors for individuals who don't speak English as their first language or don't speak English at all. There's such an enormous service disparity, at least in the United States, and work in aphasia research has been so English centric, that it's created these major barriers to having adequate services. But luckily, we're starting to kind of get on the ball a little bit, this field is receiving a lot more attention. There are some really great researchers on the case. I've been to some recent conferences where there have been a lot of great presentations. The Saffran Conference was dedicated to this idea, there was a great workshop by Jose Centeno. At the Academy of Aphasia, there were some really great presentations there on this topic. So I feel like we're, we're moving forward in trying to close the gap in services for people who are bilingual. JANET: I agree with you on that. And many times, it's also on the clinician. Clinicians might be bilingual themselves, but they might not be. How can you best support the clinicians who does not share a language with the client or the family members yet still has to serve that individual? It's, again, another challenging area that you've undertaken the study. You are busy, I bet. So in addition to everything you've been doing over all these years, I mean, the complexity and absent and bilingualism, you also have now added something to your area of interest. I'd like you to talk for a little bit about that, if you would, and that is your interest in counseling persons with aphasia. How did you become interested in that area of research? And I ask, because it just seems that there might be a story of a professional journey here. I love to tell stories and hear them, so I think this is a story that wants to telling. Chaleece: All right, well, yeah, twist my arm. Janet: Good, I was supposed to be twisting your arm, because I want to hear your story. Chaleece: So, my husband and I, when we first got to Penn State, we became friends with a couple of people who are over in counselor education. The more we got to know each other and talk more about our work, the more we realized that we were missing a lot of information in each of our fields. I never had any training and counseling, and my friends, who were counselors, hadn't really heard of aphasia. One of these friends, you know, after we had started talking about aphasia, actually, her brother had a stroke and had aphasia and so this became a very personal topic for her. She's a rehabilitation counselor and I was so shocked to learn that this was not something that she had been taught in her training, not something that she had really come across. So, we decided to start lecturing in each other's classes, and start exposing each other's students to these ideas that we felt we had missed out on in our training. We also started digging into the literature, because we wanted to see exactly what was out there, like were we crazy and thinking that this was like missing information from each of our fields. And we weren't crazy, we weren't alone. There's a whole slew of professionals in mental health that don't know about aphasia and SLPs, on the whole appear to not feel adequately prepared to do any sort of counseling. So, we decided that we wanted to write a couple of papers to help practicing clinicians to provide counseling and for SLPs, to kind of understand more about counseling skills, and for counseling students to understand more about aphasia and things that they could do to help people with aphasia, and kind of bring more awareness to the issue. We also applied for some internal funding to start an interprofessional education project, aimed at better preparing our counseling students to work with people with aphasia and our SLP students to provide basic counseling. We're starting this in terms of a one off. We take one counseling student and one SLP student. We need to have them work together with a person who has aphasia, who's expressed some desire for counseling. Every semester we rotate out and have a new group. This has been such a rewarding experience. I've learned so much from my colleagues, the way that I teach my pastor students, the way that I run my research experiments, the way that I mentor students in my lab, all of that has changed so much, I kind of feel like my eyes have been open to this, this whole issue. In turn, I feel like I'm helping my students to be much more mindful in the way that they approach clinical practice and research to like, truly put quality of life first. Janet: I think that's exactly right, and the way we should be thinking, and I agree with everything you said about counseling. We have a little project where we've been looking at motivation, which is different, I realize, but it strikes me that when you think about how we counsel and bring that into our treatment, and also think about motivation, or patient engagement and bring it into treatment, there's so much more that helps us facilitate behavioral change in a patient than just a specific treatment protocol that we're delivering. Because if we haven't got someone who we can empathize with or we can connect with or who's interested in change or understands why we're doing what we're doing, it's going to be a very long road, if we're only focused on the impairment based or the specific treatment protocol. So, I think it's great that you're exposing your students to different professions and really thinking about counseling. It's a great idea. So that's a big journey that you've undertaken, and I'm sure it's not stopping here. It's an interesting journey. It's more exciting as I hear you talk about it; I hear the excitement in your voice and the passion in your voice. It's almost like you want to do everything, but of course, you have to go to sleep, and you know, there are limitations. Chaleece: Right, right. Yeah, all of those things, right? Janet: Yeah. Oh, exactly, exactly. But I will bet that you have a lot of new ideas out there and you are considering some next steps, both in clinical research and clinical activities. I heard this story of starting from a linguistic basis and maybe focused impairment, and now you're completely coming around, I don't think it's full circle, I think it's more like full spiral. You're still thinking about complexity and AbSANT, but you've got other pieces that I think will make a rich program. What are your new ideas that are percolating in that brain of yours that you'd like to see move forward? Chaleece: So, I've applied for sabbatical? I haven't heard back yet whether or not I've received it, but I'm hoping that I can spend the next year focusing my efforts, specifically on what I see as being health disparities. It is related to both bilingualism and mental health and aphasia. So one of the things that I'm really interested in is, is expanding our IP program for counseling and SLP students. I'm also hoping to work with Jose Centeno to work to address service disparities in bilingualism. I know that that's a really big topic of interest for him and our interests seem aligned on there. I'm excited to learn more from him. I'm planning to meet with Amy Dietz and work with her to think more about some of these holistic approaches to aphasia rehabilitation. I've really enjoyed hearing about her yoga program that that she's been doing. I've always had this kind of nagging thought this was something that she and I kind of talked about and really connected on, it kind of goes back to interprofessional practice. It's this idea that we tend to ignore all of these other things that we don't see as being language related, right? We don't think about diet and exercise and sleep on cognitive outcomes. But there's so much research out there showing how these things can affect your thinking. So they must be affecting the rehabilitation outcomes in people with aphasia. I have been interested in the role of exercise in aphasia rehabilitation, we I'm part of an am CDs writing group, and we did a review looking at the effects of exercise and aphasia. There's just a huge gap in the literature. So it's definitely an area that we should be focused on. I don't currently have an exercise research project going but, in the meantime, I have actually partnered with Francine Cohen at Temple to establish Aphasia Cycling Club. This thought had been in the back of my mind for a long time, my husband and I are avid cyclists. And I thought, you know, if people with aphasia could find this much joy in in cycling, and if they could do it together, like that would be great. But then I hesitated because I thought, you know, would they actually be interested? Is this something that anybody wants to do? Am I just a freak, because I like cycling, and I think everybody else should. But I decided to go ahead and reach out through the ARCH network, and I got a surprisingly positive amount of responses back that people were really jazzed about this. Frannie was one of those people that got back right away and said, “I am an avid cyclist, and I would love to do this.” So, I got really excited about it. I got pushed a little bit in the direction by Deb Myerson and Steve Zuckerman, because I don't know if people are aware, but they did this stroke across America campaign where they rode from Northern California all the way to Boston, to spread awareness for aphasia, they have stops along the way. I recommend looking it up because it's a very inspiring journey that they took. These things got me thinking that this could work. We've started meeting with some physical therapists and adaptive sports people in Philadelphia and in Hershey so far, to try and get this going. We're hoping to try and get some people in Pittsburgh as well. We're super excited about where this could go. If anybody listening to this has any suggestions, please contact me. I'm happy to receive any sort of feedback and suggestions that people have to offer. Janet: What a terrific idea! Francine is such an enthusiastic person and. I think with the two of you leading this, it's just going to grow greatly, I think sometimes as we talked earlier, we get so focused on the language, we forget the people with aphasia would like to do other things. Or maybe they did other things before they had their strokes, and perhaps they have some physical challenges right now, so we tend not to think about bicycling. I think it's awesome. A Bicycle Club. That's wonderful. Chaleece: I hope it works out. I hope that it provides people with as much joy as it's provided me, Janet: I bet it will. I can see you doing something like, even if there's someone who has aphasia, who simply cannot end up riding, but if you have riders, and you take videos, and you involve the people who cannot ride with you in that manner, well, that also achieves a quality of life goal. I think. Chaleece: That's a great idea. Janet: Good. I hope it works out. I think of that because we have an friend who's an avid bicyclist, and he always straps on his head camera and will post his videos all the time about places he goes. Your cycling group, your aphasia cycling club, can do the same thing. What a great idea, I look forward to seeing it actually happen and seeing the videos that you make and the work that you do. Chaleece, as we bring this conversation to a close, I would like to ask you to reflect on your interest in aphasia, your work with persons with aphasia and their family members and care partners, and in particular, your amazing journey from starting as a linguist to developing a bicycle club for people with aphasia. And I'm wondering if you have any pearls of wisdom, you might share with our listeners, or what I sometimes like to call Monday morning practices. And by that I mean ideas that clinicians can incorporate into their busy practices quickly and easily to perhaps change their thinking or change how they engage with clients. Chaleece: In reflecting on my journey, I really maybe just to encourage other researchers to think about, so I started out really kind of focused in this kind of an impairment based mode, and gradually moved over to this person centered care, but I haven't discarded the idea of impairments based treatment, right? The idea is that you just kind of, house that in, you know, you fold it in to your person-centered care to the life participation. From my own research, the things that kind of float to the surface for me are, first that the brain can change long after the chronic stage has started. This, this idea of a plateau, I know that I feel like I'm preaching to the choir, probably about this idea, but it's still kind of amazing to me, how many people still feel like this is there's a plateau, right. The other is not to be afraid to work on challenging tasks, like digging into the meanings of abstract words. With supportive conversation I found that this can be very rewarding, even for people who have very limited verbal output. In terms of I don't know, Monday morning practices like something easy to incorporate. I feel like I'll my pearls are kind of borrowed. There's a great one that I borrowed recently from Linda Worrall's amazing presentation as IARC. She suggested a way to form a simple habit was to just ask two questions at every treatment session. This could be a small change just to form better counseling habits as SLPs. She suggested at the beginning of the session to ask, “How are you feeling?”, which is a very different question from “How are you doing?” It allows people to open up a little bit more and actually talk about how they're feeling. Then at the end to ask, “What is the best thing that you're going to do today?” I started doing this as soon as she mentioned, I'm like, I'm going to do this. And I did it. I started doing it with all of my clinical research sessions that I do. It's really helped me to form better relationships faster with my research clients. I feel like they are telling me more about themselves. They really open up at the beginning of the session telling me how they're feeling, and that actually helps me to gauge how I go about this. Yes, for treatment research, you have a protocol, right? But the way you go about these treatment steps, you know, you can frame them in different ways, right? If I have a client who's feeling very anxious, I can say before each thing that we do that's challenging, I can say, “Okay, take a deep breath. All right. Now let's do this. This piece of the puzzle.” That seems to really, really help, It helps me to know where my clients are at to begin with, and asking “What they're doing? What's the best thing that you're doing today?” It's just so much fun to hear people get really excited about what they're doing. Sometimes they might say, “Well, nothing today, but tomorrow, I've got this great thing planned.” It's a really nice way to end the session on a really positive note, Janet: Borrowed or not, those are excellent pearls, and they are simple things that we can do. I do remember Linda Worrall's talk that you were referring to. It makes so much sense. We have these grandiose ideas, but you have to start with a couple of small things and how can you change your behavior tomorrow, very small, but that will pay great dividends. It sounds like those changes have paid great dividends for you already in your research sessions. Today's conversation for me, has been exciting and interesting and thought provoking and would like to thank my guest, Dr. Chaleece Sandberg for sharing ideas, results, outcomes and thoughts from her clinical research journey in aphasia. Chaleece I greatly appreciate your taking the time to speak with me today, and again, congratulations on receiving a Tavistock Scholar Award. Chaleece: Thank you so much. This was delightful. I Janet: would also like to thank our listeners for supporting Aphasia Access Conversations by listening to our podcasts and learning from all of the guests that we've had over the years. For references and resources mentioned in today's show, please see our Show Notes. They are available on our website, www.aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, please email us at info at aphasia access.org For Aphasia Access Conversations, I am Janet Patterson and I thank you again for your ongoing support of aphasia Access References Kiran, Swathi, and Cynthia K. Thompson. “The Role of Semantic Complexity in Treatment of Naming Deficits: Training Semantic Categories in Fluent Aphasia by Controlling Exemplar Typicality.” Journal of Speech, Language, and Hearing Research 46, no. 3 (June 2003): 608–22. https://doi.org/10.1044/1092-4388(2003/048 Mayer, J., Sandberg, C., Mozeiko, J., Madden, E. & Murray, L. (2021). Cognitive and linguistic benefits of aerobic exercise: A state-of-the-art systematic review of the stroke literature. Frontiers in Rehabilitation Sciences, 2. https://doi.org/10.3389/fresc.2021.785312 Sandberg, C. (2022). Tutorial for Abstract Semantic Associative Network Training (AbSANT): Theoretical rationale, step-by-step protocol, and material resources. Perspectives of the ASHA Special Interest Groups: 7, 35–44. https://doi.org/10.1044/2021_PERSP-21-00176 Sandberg, C. W., Bohland, J. W., & Kiran, S. (2015). Changes in Functional Connectivity Related to Direct Training and Generalization Effects of a Word Finding Treatment in Chronic Aphasia. Brain and Language, 150, 103–116. Sandberg, C. W., Nadermann, K., Parker, L., Kubat, A. M., & Conyers, L. M. (2021) Counseling in Aphasia: Information and Strategies for Speech-Language Pathologists. American Journal of Speech Language Pathology, 30(6), 2337-2349. Thompson, C. K., Shapiro, L. P., Kiran, S., & Sobecks, J. (2003). The role of syntactic complexity in treatment of sentence deficits in agrammatic aphasia: The complexity account of treatment efficacy (CATE). Journal of Speech, Language, and Hearing Research, 46(3), 591–607. https://doi.org/10.1044/1092-4388(2003/047) Worrall, L. (2022). The why and how of integrating mental health care into aphasia services. Presentation to the International Aphasia Rehabilitation Conference. Philadelphia PA, June. URLs AbSANT Abstract Semantic Associative Network Training. SANDLab. https://sites.psu.edu/sandlab/projects/absant/ Academy of Aphasia https://www2.academyofaphasia.org/about/ ANCDS Academy of Neurologic Communication Disorders and Sciences. www.ancds.org ARCH Network Aphasia Resource Collaboration Hub https://aphasiaresource.org Collaboration of Aphasia Trialists https://www.aphasiatrials.org/ Eleanor M. Saffran Conference https://www.saffrancenter.com/conferences Stroke Across America https://www.stroke.org/en/stroke-connection/stroke-onward/stroke-across-america
Welcome to this Aphasia Access Aphasia Conversations Podcast. My name is Janet Patterson. I am a Research Speech-Language Pathologist at the VA Northern California Healthcare System in Martinez, California, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their efforts in engaging with persons with aphasia and their families through a variety of educational materials and resources. I am today's host for today's episode that will feature Dr. Nina Simmons-Mackie and Dr. Jamie Azios. These Show Notes accompany the conversation with Dr. Simmons-Mackie and Dr. Azios but are not a verbatim transcript. In today's episode you will learn about: Lache Pas La Patate! and aphasia The importance of being mindful of gap areas in aphasia service and research Moving aphasia care best practices from knowledge to action Dr. Janet Patterson: Welcome to our listeners. Today I am delighted to be speaking with two individuals who are well known in the field of aphasia rehabilitation, Dr. Nina Simmons-Mackie and Dr. Jamie Azios. Nina and Jamie authored the text, Aphasia in North America, which is also known as the State of Aphasia Report. The original State of Aphasia Report was published by Aphasia Access in 2018, and contains information describing, among other topics, the frequency and demographics of aphasia and its impact on individuals and society, and aphasia services and service gaps. The State of Aphasia Report is a valuable resource for clinicians, researchers, administrators, and third-party funding agencies as we seek to craft a rehabilitation atmosphere that balances the treatment evidence base, the resource support for community aphasia groups, and the principles of client centered care. An updated State of Aphasia Report is forthcoming. Each of our Podcasts in 2021 and 2022 highlighted at least one of the gap areas in aphasia care mentioned in the original State of Aphasia Report. For more information on the original State of Aphasia report, check out Podcast Episode #62 with Dr. Liz Hoover, as she describes these ten gap areas and their impact on aphasia rehabilitation. Our conversation today takes a broader view of the aphasia service gaps, crossing all ten gap areas. My questions for Nina and Jamie will ask them to reflect on the impetus for the original State of Aphasia Report, as well as the changes that appear in the updated State of Aphasia Report. My first guest is Dr. Nina Simmons-Mackie, Professor Emeritus at Southeastern Louisiana University in Hammond, Louisiana. She has received the honors of the American Speech-Language-Hearing Association, the Louisiana Speech-Language-Hearing Association, and the Academy of Neurologic Communication Disorders and Sciences. She has published numerous articles and chapters and has had many years of clinical, academic and research experience in the area of adult aphasia. Also joining me today is Dr. Jamie H. Azios. She is the Doris B. Hawthorne Endowed Chair in the Department of Communicative Disorders at the University of Louisiana in Lafayette. Her research interests include qualitative research methodologies, understanding perspectives of people living with communication disabilities, co-constructed conversation and aphasia, and the impact of communicative environments on social participation and inclusion. She has published articles related to client centeredness, communication access, and life participation approaches to aphasia. Welcome Nina and Jamie to Aphasia Access Conversations and our discussion about the State of Aphasia Reports. Dr. Nina Simmons-Mackie: Thanks Janet, happy to be here. Dr. Jamie Azios: Really excited and honored to be here. Thanks for having us. Janet: Good, and I look forward to a great discussion and learning about the State of Aphasia Reports. Nina and Jamie, I would like to begin our chat today by asking about the original State of Aphasia Report. Many of our listeners are familiar with the book, which is a resource published by aphasia access, describing the social, financial and life quality consequences of aphasia. It contains current statistics, compelling stories, and a one-stop report to understand the state of aphasia care in North America. Nina, you were the impetus for this project and oversaw its production. How did you organize a team to think about the need for this project and envision the value it could provide to people with aphasia, clinicians, medical and rehabilitation professionals interested in aphasia, administrators, and organizations who fund aphasia research? Nina: Well Janet, when I started out in the field of aphasia, it wasn't all that difficult to review the literature on an aspect of aphasia. Now, the amount of information is just overwhelming. A kernel of an idea started forming as I was involved in a variety of projects that required a huge amount of effort gathering statistics and references to justify different types of services for aphasia. As I talked to lots of colleagues floating the idea for a comprehensive report, everybody agreed that it would be immensely helpful to pull data from diverse sources into one document. Something that could be a quick reference for grants or advocacy or program proposals. I also had some personal experiences at the time that highlighted some gaps in the system of care for aphasia. So, it really struck me as a worthwhile undertaking and the board of Aphasia Access was really supportive of the idea. We succeeded in pulling together a diverse team of experts to serve on an advisory committee to review the chapters and vet the information. The report was originally envisioned as a relatively brief statement of gaps, but as I got into the literature, I realized that it was too much for just a short paper. In fact, it turned into 163 pages in the original document published in 2018. Now, it's been about five years since this publication, and so much has happened in the aphasia world. So, we felt like it was time for an update. Next year, we hope the state of aphasia will be published. Jamie graciously agreed to join me in this project, researching and writing the updated report. Jamie, you might have some comments on the update. Jamie: Yeah, it's been so fun to work on this project with Nina. I've learned a lot from reviewing all the work in our field, and other fields too. Just getting my feet wet with the kind of experiences that Nina was talking about, pulling together this key information from so many places. It's been really challenging, but it's also been really rewarding. I didn't realize just how much has changed in the last five years. There're just some amazing things happening in terms of aphasia programming, and technology, and attempts at overcoming gaps and equity and inclusion. That's not even talking about the way stroke and aphasia care has been impacted by our worldwide pandemic. So, in terms of what's new for the update, you can expect us to hit on all those new key areas. We're really going to try to highlight both the gaps and solutions over the last five years. Janet: You both describe such an exciting project. Time flies, and things happen. And if you get busy in your own little world, sometimes you don't recognize all the things that are going on around you and all the changes. This is a great idea that you had 100 years ago Nina or maybe five or six. I'm glad Jamie, you're part of the current project. One component of the original State of Aphasia in North America is a list of ten gap areas, and you mentioned those a moment ago Jamie, gap areas in aphasia care and aphasia research. In planning our podcasts, we identified at least one of these gap areas to highlight in each interview. The ten gap areas are listed in the show notes for this conversation and discussed in Aphasia Access Podcast Episode #62 with Dr. Liz Hoover. So, Nina and Jamie as well, how did your team identify the gap areas for the original State of Aphasia Report and consider the potential for their influence on aphasia care and research? Nina: Well, really the gap areas grew directly out of the data. It was similar to a literature review. The main difference is that a typical literature review addresses a specific topic, whereas this report addressed any topic that might be useful to advocate for aphasia services. So, the sources included government statistics, some original surveys of clinicians in North America, and grey literature. Both Jamie and I have a background in qualitative research so our approach has been pretty much like qualitative research. We take a broad-based look at the literature and identify themes that seem like topics that would be important in advocating for aphasia services. And then as we dig in and begin collecting the information, the gap areas become fairly obvious. In other words, we don't just think up gap areas. They represent what is described in the aphasia literature. Jamie: We mentioned this earlier, but one of the big gap areas that's going to be recognized in the update, likely because of the impact of COVID and our shifts to engaging more digitally, is the idea the inaccessibility that people with aphasia have when it comes to using technology. We know that there has always been a digital divide, but it seems like COVID, and the loss of face-to-face contact has really widened that gap. Also widening that gap is just the fact that older people in general are using technology more and people with aphasia seem to be falling behind when compared to their age-matched peers due to these accessibility issues. The data show that people with aphasia don't text as much as other people their age, they seem to have more difficulty retaining technology skills, they have difficulty using social media platforms. We know that these things are critical for maintaining social connection. So even before COVID, we saw an increasing use of technology to access information, interaction, across a range of activities. But during COVID, and even after COVID, there's an absolute explosion. We do plan to dedicate a chapter to technology and accessibility. Janet: That's good, which leads me right into my next question for the two of you. I wonder if you would reflect on the original State of Aphasia Report and its contents and describe the changes in the information in the updated State of Aphasia Report? In particular, would you comment on the ten gap areas in the original report, and any changes in the updated report? I know you've alluded to a few of them in the last few minutes, but I'd like you if you will, take a few more minutes to be a little more specific about the nature of the gap areas, and how they're changing as we look forward to the updated State of Aphasia Report. Nina: I think the original report definitely raised an awareness of the gaps and aphasia services. Those gap areas remain relevant, so it's not like we're going to drop out gap areas. But the good news is that there's been a surge in the research and the literature relative to some of those gaps. It's typical that there is a significant lag from research and publications to implementing research into actual daily practice. This is what's interesting relative to the update, looking at how those gaps have affected actual daily practice. I think there have been two Podcasts on implementation that aphasia access has presented. One was Rob Cavanaugh talking about issues in implementation back in October, and Natalie Douglas talked about implementation science in 2021. That's significant relative to the gaps and aphasia services that we've recognized. I'll give you an example. A very recent Podcast by Sameer Ashaie addressed mental health and people living with aphasia. Mental health services was a big gap identified in the original 2018 report. Now, as we've updated the report, we find that attention to mental health and daily aphasia practice continues to be a significant gap. Not many SLPs are screening for depression and mental health professionals remain relatively uninformed about how to conduct counseling with people with aphasia. But it's been said that approximately seven or eight years is often the time it takes to move from research to implementing research in daily practice. The good news is that the literature in the area of mental health, for example, has surged since the 2018 report. We found 47 new papers on mental health and aphasia published in just the past five years. That's a typical journey that we see from a gap in service to implementation of the services and awareness of the problem and recognition of the need to change have to happen first. I think we've met that requirement of building awareness of a lot of these gap areas. Now, we have to focus on how to move from knowledge to action, meaning that SLPs and other health care professionals have to figure out how to address things like mental health in daily practice. I see the report as helping us see where we are on that road to best practices, and possibly pushing faster than the seven-to-eight-year gap in research to practice. Also, one of the gap areas was in SLPs addressing participation in daily practice. A very similar thing seems to have happened in that there's an increase in research in participation-oriented activities and therapy. But the actual practice, according to a survey that we've done recently shows that SLPs are about the same as they were in 2018, relative to actually integrating participation-oriented tasks into daily practices. I think it gives us an outline of where we have to move with this current report. Jamie: Yes, and that makes me think of some of the work that I'm working on now for the updated version in communication access, which was also a gap area in the original version of the State of Aphasia Report. Something that's really struck me is that over the last five years, so far there's been 25 new communication partner training studies in healthcare settings. That includes training healthcare providers or healthcare students that are going to be working, mostly the studies are in hospitals. That's amazing, in the past five years that's a lot of work that's been done in that area. But the other thing about that work is that has helped us learn more about the complexity of delivering an intervention like that within a health care system. A lot of the studies that have come out have also showed, by interviewing nurses and other health care staff that have been trained, that even after training healthcare providers still seem to have a really narrow understanding of what communication supports are, or there might be a burden for implementing those into their daily routine care tasks and other things that they're doing. In general, nurses have expressed more critical than positive views about the relevance and the usefulness of communication partner training. It seems like healthcare professionals know the strategies are good. They know they need to use the strategies, but then they kind of get stuck in a place of uncertainty about how to switch up when it doesn't quite go the way that they expect it to go in an interaction. I remember one of the quotes from a paper that talked about this was a nurse saying something like, “I went to use a strategy. I know it didn't work. The patient became increasingly frustrated, and I needed to use a different strategy, but I just didn't know what to do.” So, in thinking about moving forward, it's great that we see this work coming out, but it's a continued focus on shaping these programs and understanding the systems that maybe we need to approach it a little bit differently or make some adjustments so that we're really carrying through with the goal of the intervention and the outcomes are as we expect them to be and are positive. Janet: This is exactly research into practice. Isn't what you just described, Jamie, much like all the human nature that we do? When we first learn something we're not so sure about it, and we don't quite know what to do when things don't go as we anticipate. The more familiar we become, the better we are at switching up as you say or changing or keeping our goal in mind, which is exactly what I'm hoping that we can talk about and the information in this updated State of Aphasia Report will help clinicians and researchers. Nina, you mentioned two things that are something that I think about a lot and first of all, was your comment about the Podcast with Rob Cavanaugh. That was my Podcast with him, and we had a wonderful conversation. I love his ideas paying attention to, how do we actually deliver the service and are we doing what we think we are doing? And given the specific confines that we are working within, are we able to achieve the effect that we want, or do we have to make some changes? To me that seems like an important line of thinking and of research coming up about how we can make a difference given what we have or given whatever constraints we have. The other comment that you made is about depression and mental illness. I think back to my Podcast with Rebecca Hunting-Pompon and some work that she's been doing, really looking at depression and the prevalence of it among people with aphasia, and it's greater than we think. So, your comment about identifying it as a gap area and what we're going to do. How are we going to take research into practice so that we can actually address those points that you're making. Which goes into my next question to ask you, as we look forward to the future of aphasia care, and specifically, as we move from research into practice, how might you see the information in the updated State of Aphasia Report and the gap areas that you'll identify within that publication? How do you see that continuing to guide aphasia care and research? Nina: I think like the first report, the updated report will continue to raise awareness of major areas of need for people living with aphasia. I think it'll continue to serve as an advocacy tool. I know people have told me that they've pulled out parts of the original report to present to administration, and people have borrowed statistics to put into grants and things like that. So, I think those kinds of activities would continue. The report highlights areas where research is desperately needed. For example, there's a whole section on social isolation in aphasia, and we have data that's grown in the past five years verifying that this is a problem. This updated report shows that we haven't really seen very much in the way of intervention research or models for relevant interventions to address social isolation. I think as people read the report, they'll recognize areas where research is needed, and exactly where models need to look at practical ways to implement these different interventions. The report can highlight those kinds of questions so that researchers and clinicians can begin to address those questions in the next five years. It's just kind of a little push to keep the system moving along to be more efficient and more focused on addressing the needs of people living with aphasia. Jamie: You know, another thing is, I think it's going to be good as Nina said, directing researchers and clinicians into maybe some practices that we need to make sure that we incorporate whenever we're thinking about what research is valuable, and what research is worth doing and the impact of that research on the people with aphasia. Something that's coming up as maybe a new gap area or continued gap area is the idea of stakeholder engaged research and including people with aphasia in that process. That was another Podcast that we just recently, I think, had in the last month or so. Something that Dr. Jackie Hinckley said that really struck me was that research that's produced in collaboration with stakeholders is efficient, even though it's more time consuming. That's because it has a better chance of making it into actual clinical practice. It can also be incorporated much quicker than research that's solely dictated by the interest of the researcher who likely doesn't have a full understanding of the barriers or the institutional problems that exist in a space. So, that's another idea of just thinking forward in ways that we hope that these gap areas are going to be addressed. Janet: Both of you just in answering this last question and in things that you've said earlier, have touched upon the concept of how do you go from research to practice and most specifically, in the area of clinician work? It's lovely to say things, but how do you actually do it? How do you implement it? How do you get comfortable with a particular action and being able to change course, if that action is not working? I know it's important for aphasia clinicians and researchers to be mindful of the gap areas in aphasia care and to address them in their work, but that is a charge to us that is sometimes easier said than done. During our Aphasia Access Conversations, we've asked guests for their thoughts on how clinicians and researchers can implement actions in their daily activities to address a gap area. Importantly, we've asked our guests to consider actions that are easy to implement yet may have a broad impact on persons with aphasia or the family or the clinical environment. I wonder if you would each share with our listeners some of your ideas and thoughts on how aphasia clinicians and researchers can remain mindful of the gap areas in the midst of their busy schedules, and feel comfortable incorporating specific actions? I see, and I know you see it as well, you get busy in a clinical life and all the daily activities, and you start to forget, “Oh yes, I should be mindful of the gap, but I forgot because I had a report to write.” So, I wonder if you could give us some very practical ideas, thinking from the perspective of a clinician and how they can bear in mind the gaps and how their actions might relate to them? Nina: Well, one of the different things in the updated report from the original report is it will include solutions that are drawn from the research literature. But of course, the problem that you alluded to is much of our research is not always feasible in the whirlwind of everyday practices. I think the message for researchers that Jamie alluded to, is to make the interventions that are being trialed more practical by getting the input of stakeholders, of clinicians, of people with aphasia, to see if they're generalizable to everyday practice. I think the biggest need is for all of us to remain aware of gap areas, so we're not just thinking about language, but thinking about mood, and family needs and daily lives. Awareness of gaps is the first step towards improving those services. One of the things we used to talk about a lot was long-term and short-term goals. The terminology now is sort of moving towards talking about aims and targets of therapy. Using that terminology, we need to be sure that the aims of therapy, that is the ultimate goals, are stated in terms of participation in chosen life roles or activities, not in terms of WAB scores, or how many words a person can name. In other words, the ultimate targets that are worked on in therapy need to lead to meaningful outcomes. To me, one of the most practical things is for us all to envision goal setting in a way that places us in the position of looking at what gets in the way of those big picture aims. It's not always just things like language problems. It may be other things like confidence, depression, poor support for partners, lack of opportunities to communicate with other people. So, thinking more broadly about those ultimate aims or goals for each person with aphasia helps us see what the most efficient targets are for therapy. If a big barrier is depression, then that needs to be addressed or improved, because word finding won't make any difference if the person is too depressed to engage with other people. I guess what I am saying is, being aware of gaps in services and of the domains that impact life with aphasia helps the clinician to orient to what is needed most for that person, rather than what we habitually just go in and do every day. Another suggestion is to get help. Going back to the example of the mental health needs. Maybe investing initial energy in training some mental health professionals on your rehab team or in your community how to communicate with people with aphasia, and how to do that kind of specialized counseling that's needed for this population. Then, when somebody pops up and you feel that they're depressed, you have a resource there that you can refer the person with aphasia to, so that it doesn't fall on your own shoulders to manage the depression yourself. The same thing goes with using the rehab team to increase participation. So that whole idea of dividing and conquering. As I said, the updated report shows that SLPs don't focus that much on participation-oriented activities. But if the rehab team all identified a participation goal in unison, that interprofessional kind of approach, and then all worked together towards fulfillment of that aim or participation goal, then it takes a little of the burden off the SLP in their daily frenzy of activity. Janet: You know, Nina, you gave an excellent example. Another good example and an illustration of that was in a conversation with Mary Purdy a little while earlier this year, where she talked about interprofessional education. One of the goals, which is exactly what you said, was how do you get the rehab team thinking about it? The example that she gave was from her own personal experience about everybody was working towards helping an individual. The problem, what got in the way, the individual wanted to knit and couldn't knit. So how do they all work together, from language, from the occupational therapist, and physical therapist, to remove the obstacles and then allow the rehabilitation to consider. So, that's exactly right. And, Jamie, I know you've got some ideas as well. Jamie: Well, that was just inspiring. It makes me want to go be a clinician every day again in long term care, because it's just really inspiring to think about change in that way of clinical practice. What came to me when you said easy to implement, but have a broad impact, it brought me back to a paper that I was reading. It's by Mia Loft and colleagues, and it's called, Call for Human Contact and Support. It's a paper about stroke survivors and their experiences in inpatient rehabilitation. Essentially, what they communicated was that they just wanted to be treated like humans. They wanted to be asked how they were doing. They wanted to be talked to like they were a person and not a patient. The really interesting thing was that they felt like these negative experiences really derailed their rehabilitation and motivation to get better, because they were so worried about what was going to happen after they left this place, “What happens when I go home? Am I going to go back to work?” These really negative emotional feelings disrupted the very start of their rehabilitation journey. Instead, what they ended up doing was kind of sitting in isolation most of the time and feeling like their interactions with healthcare workers were negative. That made me think back to the tiny habits talk that Linda Worrall gave at IARC. We as SLPs, we're the models for what good communication looks like in those settings. I think it's kind of our responsibility to start building those habits into our own practices. It might change a little bit of a shift in our view about what therapy looks like, and what's our role in that situation. It might take us recognizing the importance of stopping and asking somebody, how are you doing, but really listening. Maybe starting small with some of those tiny habits and being a model can really influence our other colleagues that we're working with of the importance of these small things in the rehab journey for the patient, especially early on when they're dealing with these emotional consequences of diagnosis. Janet: You mentioned the word motivation, which of course was another previous Podcast with Mike Biel talking about the role of motivation. Everybody says, “oh yes, yes, motivation is important to consider.” But nobody really does much about it. I mean, how do you know if somebody's motivated or not? To your point about sitting in isolation in the care facility, you can't just say that patient is not motivated, therefore, we're not going to do a particular activity. Until you have a discussion, you don't know. You don't know what they want to achieve, which is back to your comment earlier Nina, about what does this patient want to achieve in the long run? What is the aim here? And if you can have those conversations, find out the motivation, I think you have a greater likelihood of a maximum outcome, positive outcome of the rehabilitation journey. I thought of something and wonder about this idea. Wouldn't it be fun...well, maybe it wouldn't be fun, I don't know, developing a little sort of cheat sheet or a little card that the Aphasia Access might put out that has these gap areas. If it's cute, designed well, it may be something that clinicians could put on their badge or keep on their clipboards. Instead of having to remember it in their brain, it's all right there in front of them - “Remember about these gap areas is you provide a service to an individual with aphasia.” Nina: That's a great idea. Little infographic that's something people can carry around and remind themselves. Good idea. Jamie: Yeah, I love it. Janet: Well, thank you. Let's see if it comes to pass because it truly is, I think very difficult to bear everything in mind when you're in a busy schedule. Anything that we can do to help a clinician have an easier life, like you don't have to remember the gap areas, they're right here in front of you, we'll see. It's an idea. As we draw this interview to a close, Nina and Jamie, I wonder if you would each reflect on your work and experience in aphasia rehabilitation, and in preparing the State of Aphasia Reports. Are there a few pearls of wisdom, or lessons learned or words of guidance you might offer our listeners, as they interact with persons with aphasia, and approach aphasia care on a daily basis? Nina: Well, I'm not sure I have any pearls, maybe some grains of sand to irritate the thought process. I think the first point I would make is understanding, or deeply understanding the values of a life participation approach to aphasia, is critical to achieving relevant and meaningful outcomes. I think the most important clinical skill, and I alluded to this earlier, is knowing how to set meaningful participation goals in collaboration with clients. Once we learn this, then the rest sort of falls into place because you're thinking about the big picture and what is important where. I think that's a key thing is learning how to write those big picture goals, and then see how to get there. I think everyone involved with aphasia should read Linda Worrall's Seven habits of highly successful aphasia therapists. I think her PowerPoint on that topic that she presented is available on the Aphasia Access website. It's a common sense and elegant outline of the Must Do's for any aphasia therapist. It's seven things that make a good aphasia therapist, and if each item on her list were addressed, we could probably scratch off a bunch of gaps in services. I think that's another one of the things that I would recommend. Jamie: Yeah, that is a great paper. It's been so influential for me and working with people with aphasia, but training clinicians, it's a great paper. I don't have any pearls of wisdom, either. I guess my only advice and Nina you've probably heard this saying before. This is something that is said down here in Cajun country in our French culture. It's “lache pas la patate”. It means, “don't drop the potato”. Essentially what that means is, even when things get really hard, don't give up. So if you're a clinician working in a situation where it's really hard for you to feel like you can achieve some of the things that we're talking about today, don't give up and know that we're all working towards this goal. We are recognizing these issues. I promise you, we're all thinking about these things, and that we're in it together. Janet: I love that phrase, Jamie. I'm going to learn to have it trickle off my tongue and I'm going to use it frequently. That's a great idea. Doesn't it really describe how we want to be acting as humans. We're all in this together. Be a human. This person with aphasia is another human and we're trying to help this human with aphasia, given the skills that we possess that they perhaps don't. But they possess skills that we perhaps don't so together, we're on the rehab journey. Say it again, the phrase. “lash……” Jamie: Lache pas la patate Janet: Lache pas la patate. We're going to remember that phrase. Thank you, Nina and Jamie for being part of the Aphasia Access Conversations, and for your efforts in creating the State of Aphasia Reports. I look forward to reading the updated version and seeing how its information will influence aphasia rehabilitation, and how it can assist clinicians and researchers as we continually work to improve care for and partnership with persons with aphasia and their families. I especially, am thankful that we had such a fun conversation, and I learned a new term today. The conversation we had continues to make me mindful of how we interact with everyone in our world, especially those people who have aphasia and their family members. And the people who work with or treat those people who have aphasia and their family members. And thank you to our listeners. For references and resources mentioned in today's show, please see our Show Notes. They're available on our website, www.aphasiaaccess.org. There you can also become a member of our organization, browse our growing library of materials, and find out about the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at info@aphasiaaccess.org. For Aphasia Access Conversations, I'm Janet Patterson. Thanks again for your ongoing support of Aphasia Access. Conversations, Gap Areas, References, and Words to Live By Aphasia Access Conversations Episode #62 - Identifying gaps in aphasia care and steps toward action: A conversation with Aphasia Access Board President Liz Hoover Episode #77: Voltage drop and aphasia treatment: Thinking about the research- practice dosage gap in aphasia rehabilitation: In conversation with Rob Cavanaugh Episode #72: Implementation Science, Aphasia, and Sauce: A Conversation with Natalie Douglas Episode #67: Considering depression in people who have aphasia and their care partners: In conversation with Rebecca Hunting Pompon Episode #89: Aphasia is a complex disorder: Mental health, language, and more – A conversation with Dr. Sameer Ashaie Episode #84: Interprofessional Practice and Interprofessional Education: In conversation with Mary Purdy Episode #69: Motivation and engagement in aphasia rehabilitation: In conversation with Michael Biel Episode #88: Everyone's an expert: Person-centeredness in the clinic and research - A conversation with Jackie Hinckley 2018 State of Aphasia Report - Gap Areas 1.Insufficient awareness and knowledge of aphasia by health care providers and the wider public 2.Insufficient funding across the continuum of care 3.Insufficient availability of communication intervention for people with aphasia (need for services) 4.Insufficient intensity of aphasia intervention across the continuum of care 5.Insufficient attention to life participation across the continuum of care 6.Insufficient training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care 7.Insufficient or absent communication access for people with aphasia or other communication barriers 8. Insufficient attention to depression and low mood across the continuum of care 9. Lack of a holistic approach to community reintegration 10. Failure to address family/caregiver needs including information, support, counseling, and communication training References Fogg, B.J. (2019). Tiny habits: The small changes that change everything. Boston: Houghton Mifflin Harcourt. Loft, M.L., Martinsen, B., Esbensen, B, Mathiesen, L.L., Iversen, H.K. Poulsen, I. (2019). Call for human contact and support: An interview study exploring patients' experiences with inpatient stroke rehabilitation and their perception of nurses' and nurse assistants' roles and functions. Disability and Rehabilitation, 41:4, 396-404, DOI: 10.1080/09638288.2017.1393698 Worrall, L. (2022). The why and how of integrating mental health care into aphasia services. Presentation to The International Aphasia Rehabilitation Conference, Philadelphia PA: June. Worrall, L. (2019). The seven habits of highly effective aphasia therapists. Presentation to the Aphasia Access Leadership Summit, Baltimore MD: June. Words to live by Lache Pas La Patate! (Don't Drop the Potato!) This saying means that even when things get difficult, don't give up. It is a testament to the resiliency and enduring spirit of the Cajun people. Cajuns are known for their strong family and community values. During difficult times everyone comes together and helps each other out.
In today's episode Jeffrey dives into the absolute corruption of science and scientists when Monsanto first released Roundup for widespread use. In the early studies submitted by Monsanto in 1985 the EPA clearly saw in an IARC report that rodents exposed to low doses of Roundup were developing some tumors and developing more tumors with higher doses. The EPA and IARC wanted to label it as a possible carcinogen. This was not the end for Monsanto; over the course of many decades Monsanto engaged in an entire marketing campaign to discredit these studies. Included in their plan was: "Orchestrate Outcry" Industry outreach to media.social media Third-party experts blog, op/ed, tweet, link, repost, retweet, etc. Use front groups Have grower associations write to regulators Opinion leader write letter to daily newspaper on day of IARC ruling Ghost write or inspire supporting research papers And so much more, including paying off scientists and EPA executives like Jess Rowland. The Institute for Responsible Technology is working to protect you & the World from GMOs (and while we're at it, Roundup®...) To find out exactly how we do this and to subscribe to our newsletter visit https://www.responsibletechnology.org/ Join us at Protect Nature Now to Safeguarding Biological Evolution from GMOs 2.0. The place to get critical up to date information, watch our short film and most importantly, learn easy ways for you to take action against this existential threat. Visit: https://protectnaturenow.com/ Watch the film: Secret Ingredients Watch "Don't Let the Gene Out of the Bottle" Get the book: "Seeds of Deception" IG @irtnogmos Facebook @responsibletechnology YouTube @TheInstituteforResponsibleTechinology Twitter @TheInstituteforResponsibleTechnology
Featuring articles on pemafibrate to reduce cardiovascular risk, on lifting universal masking in schools, defibrillation strategies for refractory ventricular fibrillation, bepirovirsen in chronic hepatitis B infection, and the IARC perspective on oral cancer prevention; a review article on climate change and vectorborne diseases; a case report of a woman with decreased vision and headache; and Perspective articles on privacy and security, on protecting care for all, and on transgender health and science denialism.
Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic communication impairments. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Jasvinder Sekhon about her work on enabling SLPs to feel confident and competent in counseling people with post-stroke aphasia and their families. Gap Areas This episode focuses on on Gap Area 8: Insufficient attention to depression and low mood across the continuum of care. Guest info Jasvinder Sekhon is a speech-language pathologist currently working clinically in Melbourne, Australia. Since graduating from La Trobe University in the early 1990s, Jas has worked across the continuum of care in public health services in Victoria, Australia and briefly in Singapore. Jas has been involved in the aphasia community for many years and co-convened the inaugural online Australian Aphasia Association national conference in 2021. Jas has recently completed her PhD, where she investigated counselling education that enabled SLPs to feel confident and competent using counselling to support the psychological wellbeing of individuals with aphasia and their families after stroke. Jas' supervisors for her doctorate were Professors Jennifer Oates and Miranda Rose from La Trobe University and Professor Ian Kneebone from University Technology of Sydney. Her studies sit under the research program Optimising Mental Health and Wellbeing of the Aphasia Centre for Research Excellence and Rehabilitation. The director of this CRE is Professor Miranda Rose. Listener Take-aways In today's episode you will: Learn about the stepped model for psychological care. Understand how speech-language pathologists can support psychological well-being for people with post-stroke aphasia. Identify the role of speech-language pathologists within an interdisciplinary team providing psychological care for people with post-stroke aphasia. Show notes edited for conciseness Lyssa Rome Welcome to the Aphasia Access Conversations Podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA-focused private practice. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm pleased to be today's host for an episode featuring Jasvinder Sekhon. Jas is a speech language pathologist and PhD candidate at La Trobe University in Australia, and recently submitted her thesis. She currently works part time as the senior SLP at a not-for-profit community health organization in Melbourne. Her studies are part of the research program, Optimizing Mental Health and Wellbeing at the Aphasia Center for Research Excellence. She has been involved in the aphasia community in Melbourne for many years, and is a member of the Australian Aphasia Association. She co-convened the first online Australian Aphasia Association national conference in June, 2021. Today we'll be discussing Jas's research, which focuses on enabling SLPs to feel confident and competent in counseling people with post-stroke aphasia and their families. In the Aphasia Access Conversations Podcast, we've been highlighting the gap areas identified in the State of Aphasia report by Dr. Nina Simmons-Mackie. In this episode, we'll be focusing on Gap Area 8, insufficient attention to depression and low mood across the continuum of care. For more information about the gap areas, you can listen to episode number 62, with Dr. Liz Hoover, or go to the Aphasia Access website. So Jas, what led you to want to study counseling training for speech language pathologists? Jasvinder Sekhon Firstly, thank you so much to the listeners and to Lyssa for this opportunity. So my impetus for my PhD arose from observing a range of emotional issues occurring frequently in people with aphasia and their families. My clients had issues such as depression, worry, frustration, low confidence, and distress. And despite my many years of experience in the field, there were many times that I felt inadequate to respond adequately or effectively to my clients' emotions. So in doing this research, I found that I was not alone. Survey studies of SLP practice and post-stroke aphasia rehabilitation from Australia, the US, UK, and South Africa have found that the majority of speech pathologists feel that they have low knowledge, skills, and confidence to assess or manage emotional and psychological well-being in their clients with post-stroke aphasia—and this includes their families. So working with colleagues on the stroke team who had mental health training, such as psychologists and social workers, I learned many counseling techniques, and also learned about counseling approaches and brief therapies that I thought could be useful for speech pathologists in their work. As part of my PhD studies, I've also undertaken further reading and some short courses in counseling. And I am privileged to have had the supervision of professors Miranda Rose and Jennifer Oates of La Trobe University, and Professor Ian Kneebone, from University of Technology, Sydney, who have a wealth of professional and research experience in the fields of psychology, stroke, and counseling, and speech-language pathology. Lyssa Rome So can you tell us about an experience that for you points to the value of incorporating the Life Participation Approach to Aphasia into your clinical work? Jas Jasvinder Sekhon Thanks. Yes. So early in my career, I focused on impairment-level therapies. And I think there's evidence to say that's the area that we are most trained in. But I also felt something was missing. An example was one day a client I was treating in her home, literally sent me packing. After day in, day out, I was focusing on just impairment therapy, which was the comfort area. After she threw me out and after tending to my wounded ego and reflecting, I realized that I had not found out what was meaningful to her and what she wanted out of her rehabilitation. I was being very clinician-directed, and I drove the focus of therapy. She was a busy, active, courageous single mother of two teenage girls and had stuff to do and places to go. And I was not addressing her needs, or her wants, for her to fully participate in her life. And my therapy was not aimed at helping her to achieve these life participation goals. So since then, I have pursued a holistic, biopsychosocial view of aphasia rehabilitation, and I now spend time to ensure I hear the person's story, understand their needs, wants, and goals from speech therapy, and I collaboratively set out an action plan towards meeting these goals. The assessment and management of psychological well-being is an important part of post-stroke aphasia rehabilitation and comes up often in speech therapy. I have certainly found counseling skills to be essential in my clinical practice. Lyssa Rome Thank you. I feel like most of us in clinical practice would recognize how common it is for people with aphasia to also be dealing with low mood or anxiety. Certainly I, and I think others, worry at times about whether we're really meeting the emotional needs of the people whom we're working with. I know that there's been some attention to this for years. It seems like increasingly researchers in the aphasia community have been thinking more and more about these issues and recognizing their importance. I know this last summer, and IARC, Linda Worrall's keynote address, and other sessions focused on counseling for people with aphasia. Here in the US, ASHA has a new special interest group that's focused on counseling. And those are just two examples. I think that there are many more. I'm wondering how you see awareness of this issue changing? Jasvinder Sekhon Yeah, the emotional and psychological issues associated with communication disorders have been well-recognized for decades, as you said, and probably since the establishment of the discipline of SLP. The presence of psychological issues after stroke and aphasia is not new. The need for psychological care in post-stroke aphasia is also not new. I think what is changing is, in awareness, I guess, is who is responsible for providing psychological care in stroke services, how this is done, and when this is provided. This includes describing and defining psychological care, that is within the scope of the stroke team, which includes SLPs, and identifying training or education gaps to fulfill these expected roles, and ensuring that the provision of psychological care is ethical and effective. Thankfully, we have a model that provides evidence-based guidelines that addresses many of these questions. And this model is the stepped model for psychological care after stroke by the UK Government. Professor Ian Kneebone was part of the group that helped develop the psychological care model. Also, the work by Dr. Caroline Baker in translating the stepped model for post-stroke aphasia rehabilitation, highlighted further evidence for rehabilitation interventions specifically to prevent and treat depression in people with mild or no depression within the scope of speech language pathologists. Lyssa Rome So can you tell us a little bit more about this stepped model? Jasvinder Sekhon The stepped model for psychological care is a framework for interdisciplinary psychological care after stroke. The stepped model outlines the role and responsibility for the multidisciplinary team in the assessment and management of emotional and cognitive conditions after stroke. Central to this model is that the whole team take responsibility for the identification and management of psychological issues, with clearly established referral pathways to specialist support services in the case of more severe psychological concerns. There are four levels of the stepped model, and SLPs have a role and responsibility to support psychological care at level one and level two, for those who are experienced and trained. So at level one, there is no psychological disorder present and it's applicable to most or all stroke survivors. So level two describes stroke survivors with mild and transient psychological issues, and can be addressed by experienced speech language pathologists with adequate training, and who are supported by clinical psychologists or neuropsychologists with special expertise in stroke. At level three, and level four, the assessment and management of psychological issues require specialist psychology staff. So the model actually helps speech-language pathologists define their scope of practice in psychological care, and this includes counseling. Lyssa Rome So that leads me to wonder about the definition of counseling within speech-language pathology. How would you how should we be thinking about it? Jasvinder Sekhon Counseling is broadly defined as a purposeful conversation arising from the intention of one person, family, or couple, to reflect on and resolve a problem with the help of another person, and in this instance, the speech-language pathologist, to assist in resolving or progressing that problem. It may be helpful to think of all counseling interventions as methods of learning. All approaches used in counseling are intended to help people change. That is, to help them think differently, to help them feel differently, to help them act differently. In other words, in the case of post-stroke aphasia, counseling aims to help the client progress their goal within their rehabilitation journey. Lyssa Rome Thank you. That's really helpful, I think, to think about it as ways to think differently, feel differently, act differently. And in service of those goals, and the goal of helping people change, I'm wondering what kinds of psychological interventions can speech-language pathologists be expected to provide? Jasvinder Sekhon So at level one, emotional and psychological issues are mild and transient and don't impact discipline-specific therapy for example, aphasia therapy. At level one, emotional problems resolve quickly, and speech pathologists, as I mentioned before, definitely can support psychological well-being at this level. Key interventions at level one, include counseling skills, such as active listening, normalizing the emotions and the experience, building effective relationships, providing psychological advice and information to family and peers to facilitate adjustment and build the skills for self-management and for autonomy with the communication issue. Goal-setting, problem-solving, peer support, motivational interviewing, managing stress, routine assessment and review of mood are also recommended at level one. Enabling peer support and positive relationships, including by providing communication partner training, aphasia choirs, and self-management workbooks are also identified at level one. Lyssa Rome You've just described a bunch of different kinds of interventions that we as SLPs might be providing. But you also said before that many SLPs don't feel confident to assess and manage psychological well-being very effectively. So I'm wondering if you could say a little bit more about that. Jasvinder Sekhon Yeah, we conducted a systematic review of SLP counseling education in post-stroke aphasia, and found that most universities reported to provide counseling education to SLP students. However, few actually provided counseling education specifically for supporting the psychological well-being in post-stroke aphasia. So it's possible that many speech pathologists may have very little preparation to address the significant emotional and mood issues in people with aphasia after stroke. We found after speech pathology qualifications, speech pathologists reported a range of counseling education that they received. Some, again, with no training, up to PhD qualifications in counseling. But speech pathologists did report that they received counseling education from working in stroke care—so from their peers in stroke care—and also, many speech pathologists sought further education, professional development, in-services from external sources, counseling courses. So counseling, education and experience, we found, was positively correlated with feeling more knowledgeable, more skilled, and confident for supporting psychological well-being in post-stroke aphasia rehabilitation. Lyssa Rome With that in mind, and in order to help prepare SLPs to fill that role as you just were describing, you created a counseling education program. Can you tell me a little bit more about that? Jasvinder Sekhon We designed a counseling education program based on our systematic review of counseling education that speech pathologists currently receive and the stepped model for psychological care after stroke. Our program consisted of seven hours of self-paced learning and it was an online module and a workshop which was three hours, where clinicians practiced their counseling skills with peers. Topics included speech pathologists' role and responsibilities for supporting psychological well-being in post-stroke aphasia rehabilitation within that multidisciplinary team model and within the stepped model for psychological care. We included counseling theory and foundations of counseling skills, and how to apply these to speech pathology practice and specifically to the issues that we were describing common to post-stroke aphasia rehabilitation. We trialed our counseling education program with 49 practicing speech pathologists in Australia. We measured these outcomes before and after the training program, and also after five weeks of completing the training to see if the effects were maintained. Thankfully, the results of the trial were positive and we did find significant and large effects of the program on speech pathologists' self-efficacy and self-rated competency for counseling in post-stroke aphasia. Also, these effects were maintained at five weeks follow-up for both of the outcomes. Lyssa Rome That's so exciting. So for those of us who didn't get to participate in your research and who would like to get started now, or would like to brush up on our counseling skills, or deepen our counseling skills, what resources can I and other speech-language pathologists access to help them feel more confident in this area. Jasvinder Sekhon If you have access to stroke mental health professionals, for example, psychologists or social workers, have a chat with them and organize some training in those level one interventions that were described. Maybe discuss sourcing counseling education from external providers, or your team. Interventions that you could look at sourcing for these inservices could include problem-solving and solution-focused approaches, motivational interviewing, counseling training, foundation counseling skills, for example, behavioral activation, and person-centered counseling. Family sensitive and family therapeutic approaches are also vital and support speech pathologists to provide that level one intervention. There may be short courses for supporting mental health after stroke available via your National Stroke Association or via ASHA. The new special interest group that you mentioned would also be a fabulous resource for that peer support and professional development. For example, Speech Pathology Australia has teamed up with a local national mental health organization, called Lifeline Australia, to run counseling courses for speech pathologists. As we have preliminary evidence that our online counseling education program was feasible and effective for improving speech pathologists' confidence for counseling to support psychological well-being in post-stroke aphasia, we are seeking further funding to make this program into a short professional development course for SLPs, and hopefully it will be widely available for anyone who would like to take on this further education. Lyssa Rome I look forward to that. So when speech-language pathologists are better prepared to address the psychological well-being for our clients who have aphasia, how will our practice look different? Jasvinder Sekhon It's a great question and a big question. I think ideally, speech pathologists will feel prepared and confident in their role and feel prepared and knowledgeable in their scope of practice in counseling. I think practice guidelines for counseling will be clearer, and clearer in defining scope and boundaries, skills required, and processes for that interdisciplinary practice when addressing the psychological wellbeing of people with aphasia and their families after stroke. Speech pathologists will be able to conduct appropriate screening for social and psychological issues and to know when and how and who to refer to as required. I think speech pathologists who are appropriately trained will also be able to use a range of counseling skills to support the client to learn communication strategies for participating in conversations relating to all aspects of their lives, as well as strategies for supporting social and psychological well-being. These include strategies for maintaining social networks, building new networks with support from peers, and strategies for coping, adjusting, self-care strategies, and also living well with aphasia. Speech pathologists will also know how to support their own mental health and that of the stroke team members. We also will be able to measure competence for counseling in clinical training and professional practice. This is an area still in its infancy. I think finally, most importantly, the psychological well-being of people with aphasia and their families will be effectively and efficiently supported from the start of their stroke rehabilitation journey. And risk for mood disorders will be minimized or prevented and positive outcomes enhanced for all domains of health and well-being. Lyssa Rome I look forward to that day. Jas Sekhon, thank you so much for being our guest on this podcast. Jasvinder Sekhon It has been my pleasure, Lyssa. Thank you again to Aphasia Access for this opportunity. If anyone has any further questions or comments or would like to find out where things are with our counseling education program, please don't hesitate to contact me via the email, which will be available with this podcast, or through La Trobe University. Thank you again. Lyssa Rome Great. We'll have that information in the show notes for today's episode. For more information on Aphasia Access and to access our growing library of materials, go to www.aphasiaaccess.org. For a more user-friendly experience, members can sign up for the Aphasia Access Academy, which is free and provides resources searchable by topic or author. If you have an idea for a future podcast series topic, email us at info@ aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access. References and Resources Jasvinder Sekhon on Twitter: @holistic_commn Email: J.Sekhon@latrobe.edu.au Australian Aphasia Association https://aphasia.org.au/ Centre for Research Excellence in Aphasia Recovery and Rehabilitation, La Trobe University https://www.latrobe.edu.au/research/centres/health/aphasia Lifeline (Australia) https://www.lifeline.org.au/ Psychological Care After Stroke (NHS) https://www.nice.org.uk/media/default/sharedlearning/531_strokepsychologicalsupportfinal.pdf Speech Pathology Australia https://www.speechpathologyaustralia.org.au/ Baker, C., Worrall, L., Rose, M., Hudson, K., Ryan, B., & O'Byrne, L. (2018). A systematic review of rehabilitation interventions to prevent and treat depression in post-stroke aphasia. Disability and Rehabilitation, 40(16), 1870–1892. https://doi.org/10.1080/09638288.2017.1315181 Baker, C., Worrall, L., Rose, M., & Ryan, B. (2021). Stroke health professionals' management of depression after post-stroke aphasia: A qualitative study. Disability and Rehabilitation, 43(2), 217–228. https://doi.org/10.1080/09638288.2019.1621394 Doud, A. K., Hoepner, J. K., & Holland, A. L. (2020). A survey of counseling curricula among accredited communication sciences and disorders graduate student programs. American Journal of Speech-Language Pathology, 29(2), 789–803. https://doi.org/10.1044/2020_AJSLP-19-00042 Kneebone, I. I. (2016). Stepped psychological care after stroke. Disability and Rehabilitation, 38(18), 1836–1843. https://doi.org/10.3109/09638288.2015.1107764 National Health Service (NHS), UK. (2011). Psychological care after stroke: improving stroke services for people with cognitive and mood disorders. https://www.nice.org.uk/media/default/sharedlearning/531_strokepsychologicalsupportfinal.pdf Nash, J., Krüger, E., Vorster, C., Graham, M. A., & Pillay, B. S. (2021). Psychosocial care of people with aphasia: Practices of speech-language pathologists in South Africa. International Journal of Speech-Language Pathology, ahead-of-print, 1–11. https://doi.org/10.1080/17549507.2021.1987521 Northcott, S., Simpson, A., Moss, B., Ahmed, N., & Hilari, K. (2017). How do speech-and-language therapists address the psychosocial well-being of people with aphasia? Results of a UK online survey. International Journal of Language & Communication Disorders, 52(3), 356–373. https://doi.org/10.1111/1460-6984.12278 Parkinson, K. & Rae, J., P. (1996). The Understanding and Use of Counselling by Speech and Language Therapists at Different Levels of Experience. European Journal of Disorders of Communication, 31(2), 140–52. https://doi.org/10.1111/j.1460-6984.1995.tb01757.x Sekhon, J., Douglas, J., & Rose, M. (2015). Current Australian speech-language pathology practice in addressing psychological well-being in people with aphasia after stroke. International Journal of Speech-Language Pathology, 17(3), 252–262. https://doi.org/10.3109/17549507.2015.1024170 Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. (2019). Counselling training for speech–language therapists working with people affected by post‐stroke aphasia: A systematic review. International Journal of Language & Communication Disorders, 54(3), 321-346. https://doi.org/10.1111/1460-6984.12455 Sekhon, J. K., Oates, J., Kneebone, I., & Rose, M. L. (2021). Counselling education for speech-language pathology students in Australia: A survey of education in post-stroke aphasia. Aphasiology, ahead-of-print, 1-30. https://doi.org/10.1080/02687038.2021.1967280 Victorino, K. R., & Hinkle, M. S. (2019). The development of a self-efficacy measurement tool for counseling in speech-language pathology. American Journal of Speech-Language Pathology, 28(1), 108–120. https://doi.org/10.1044/2018_AJSLP-18-0012
Welcome to the Aphasia Access Aphasia Conversations Podcast. I'm Ellen Bernstein-Ellis, Program Specialist at the Aphasia Treatment Program at Cal State East Bay in the Department of Speech, Language and Hearing Sciences, and a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. I'm today's hosts for an episode featuring Dr. Arla Good and Dr. Jessica Richardson. We will discuss the SingWell Project and the role of aphasia choirs from a bio-psychosocial model. Today's shows features the following gap areas from the Aphasia Access State of Aphasia Report authored by Nina Simmons-Mackie: Gap area #3: insufficient availability of communication intervention for people with aphasia, or the need for services. Gap area #8: insufficient attention to depression and low mood across the continuum of care. Gap area #5: insufficient attention to life participation across the continuum of care. Guest Bios: Dr. Arla Good is the Co-director and Chief Researcher of the SingWell Project, an initiative uniting over 20 choirs for communication challenges around the world. Dr. Good is a member of the Science of Music, Auditory Research and Technology or SMART lab at Toronto Metropolitan University, formerly Ryerson University. Much of her work over the last decade has sought to identify and optimize music based interventions that can contribute to psychological and social well-being in a variety of different populations. Dr. Jessica Richardson is an associate professor and speech-language pathologist at the University of New Mexico in the Department of Speech and Hearing Sciences, and the Center for Brain Recovery and Repair. She is director of the UN M brain scouts lab and the stable and progressive aphasia center or space. Her research interest is recovering from acquired brain injury with a specific focus on aphasia, recovery, and management of primary progressive aphasia. She focuses on innovations in assessment and treatment with a focus on outcome measures that predict real world communication abilities, and life participation. Listener Take-aways In today's episode you will: Learn about the SingWell Project model of supporting choirs and research around the world Learn which five clinical populations are the initial targets of the SingWell Project Discover how the SingWell Project is challenging the stigma about disability and singing Learn about some of the biopsychosocial measures being used to capture choir outcomes Transcript edited for conciseness Show notes Ellen Bernstein-Ellis 02:58 I'm going to admit that aphasia choirs have long been one of my clinical passions. I'm really excited and honored to host this episode today. I'd like to just start with a question or two that will help our listeners get to know you both a little better. So Arla, is it okay, if I start with you? Would you share what motivated you to focus your research on music-based interventions? Do you have a personal connection to music? Arla Good 03:29 I feel like I could do a whole podcast on how I ended up in this field. Ellen Bernstein-Ellis 03:33 That'd be fun. Arla Good 03:34 There's just so many anecdotes on how music can be a powerful tool. I've experienced it in my own life, and I've witnessed it in other lives. I'll share one example. My grandfather had aphasia and at my convocation when I was graduating in the Department of Psychology with a BA, despite not being able to communicate and express himself, he sang the Canadian National Anthem, perfect pitch-- all of the words. It's just an accumulation of anecdotes like that, that brought me to study music psychology. And over the course of my graduate studies, I came to see how it can be super beneficial for specific populations like aphasia. So, I do have a quote from one of our choir participants that really sparked the whole idea of SingWell. It was a Parkinson's choir that we were working with. And she says, “At this point, I don't feel like my Parkinson's defines me as much as it used to. Now that I've been singing with the group for a while, I feel that I'm also a singer who is part of a vibrant community.” And that really just encapsulates what it is and why I'm excited to be doing what I'm doing-- to be bringing more positivity and the identity and strength into these different communities. Ellen Bernstein-Ellis 04:49 Yes, the development of positive self-identity in the face of facing adversity is such an important contribution to what we do and thank you for sharing that personal journey. That was really beautiful. Jessica, I'm hoping to get to hear a little bit about why what your personal connection is to aphasia choirs and music. Jessica Richardson 05:12 Again, so many things. I grew up in a musical household. Everyone in my family sings and harmonizes and it's just beautiful. But a lot of my motivation for music and groups came from first just seeing groups. So some early experience with groups at the VA. Seeing Dr. Audrey Holland in action, of course, at the University of Arizona-that's where I did my training. Dr. Elman, you, of course, so many great examples that led to the development of lots of groups. We do virtual online groups for different treatments, different therapies. We have space exploration. We have space teams, which is communication partner instruction that's virtual. So we do lots of groups. And of course, we have a neuro choir here in New Mexico. Now, I'm just so excited that there's so much research that's coming out to support it. Ellen Bernstein-Ellis 06:03 Jessica, can I just give you a little shout out? Because you were visionary. You actually created these amazing YouTube videos of your choir singing virtually, even before COVID. And you came out with the first virtual aphasia choir. I remember just sitting there and just watching it and being amazed. And little did we know. I guess you knew! Do you want to just take a moment because I want to put those links in our show notes and encourage every listener to watch these beautiful virtual choir songs that you've done. You've done two right? Jessica Richardson 06:44 Yes. And I could not have done it, I need to make sure I give a shout out to my choir director, Nicole Larson, who's now Nicole Larson Vegas. She was an amazing person to work with on those things. She also now has opened a branch neuro choir, just one town over. We're in Albuquerque and she's in Corrales and our members can go to either one. We coordinate our songs. I'd really like to start coordinating worldwide, Ellen. We can share resources and do virtual choirs worldwide and with Aphasia Choirs Go Global. But I definitely want to give her a shout out. And then of course our members. I mean, they were really brave to do that. Because there was nothing I could point them to online already to say, “Hey, people are doing this. You do it.” So they were really courageous to be some of the first. Ellen Bernstein-Ellis 07:36 Do you want to mention the two songs so people know what to look for? And just throw in the name of your choir. Jessica Richardson 07:42 We're just the UNM neuro choir as part of the UNM Brain Scouts. The first song was The Rose. The second song was This is Me from the Greatest Showman. And the song journal that you could wait for in the future is going to be Don't Give Up On Me by Andy Grammer. Ellen Bernstein-Ellis 08:01 Beautiful! I can hardly wait. And there are some endeavors and efforts being made to create these international groups. Thank you for doing a shout out to Aphasia Choirs Go Global, which is a Facebook group to support people who are involved in neuro and aphasia choirs. I'll give a shout out to Bron Jones who helped start it and Alli Talmage from New Zealand who has worked really hard to build a community there. It's been really wonderful to have a place where we can throw out questions to each other and ask for opinions and actually dig into some interesting questions like, “What measures are you using to capture X, Y, or Z?” I think we'll get to talk about some of that today, actually. So thank you. I encourage our listeners to listen to those two YouTube videos we'll put in the show notes. But Jessica, I'm going to give you a twofer here. I've been following your amazing work for many years, but the first time I got to meet you in person was at an Aphasia Access Leadership Summit. I wanted to ask you as an Aphasia Access member, if you have any particular Aphasia Access memories that you could share with our listeners? Jessica Richardson 09:09 Well, it was actually that memory. So, I would say my all-time favorite collection of Aphasia Access moments, really was working with my amazing colleague, Dr. Katerina Haley. She's at UNC Chapel Hil. We were co-program chairs for the Aphasia Access 2017 summit in Florida. The whole summit, I still think back on it and just smile so wide. And you know, we went to the museum, we were at the Aphasia House, just so many wonderful things. All of the round tables and the presentations, they just rocked my world. And it's just something I'm super proud to have been a part of behind the scenes making it happen. And I also remember that you wrote me the nicest note afterwards. Ellen Bernstein-Ellis 09:54 It was just because it impacted me, too. Personally, I felt like it just cracked open such a world of being able to have engaging discussions with colleagues. Tom Sather, really named it the other day (at IARC) when he quoted Emile Durkheim's work on collective effervescence, the sense of being together with a community. I'm seeing Arla, nodding her head too. Arla Good Yeah, I like that. Ellen Bernstein-Ellis Yeah, there was a lot of effervescing at these Leadership Summits, and we have one coming up in 2023. I'm really excited about it and hope to get more information out to our listeners about that. So I'll just say stay tuned. And you'll be hearing more, definitely. I just want to do one more shout out. And that is, you mentioned international collaboration. I'd like to do a quick shout out to Dr. Gillian Velmer who has been doing the International Aphasia Choirs. I'll gather a couple of links to a couple of songs that she's helped produce with people around the world with aphasia singing together. So there's just some great efforts being done. That's why I'm excited about launching into these questions. I want to start with an introduction of SingWell. Arla, would you like to get the ball rolling on that one? Arla Good 11:09 For sure. SingWell began with my co-director, Frank Russo, and myself being inspired by that quote I shared at the beginning about singing doing something really special for these communities. We applied for a Government of Canada grant and we received what's called a Partnership grant. It really expanded well beyond just me and Frank, and it became a network of over 50 researchers, practitioners, national provincial support organizations, and it continues growing. It's really about creating a flow of information from academia to the community, and then back to academia. So understanding what research questions are coming up in these communities of interests. And what information can we, as researchers, share with these communities? That's SingWell, I'll get into the research questions. Ellen Bernstein-Ellis 12:03 Let's dive in a little bit deeper. What is SingWell's primary aim? That's something you describe really well in an article we'll talk about a little later. Arla Good 12:15 So our aim is to document, to understand, group singing as a strategy, as a way to address the psychosocial well-being and communication for people who are living with communication challenges. SingWell, we're defining a communication challenge as a condition that affects an individual's ability to produce, perceive or understand speech. We're working with populations like aphasia, but also people living with hearing loss, lung disease, stuttering. I hope, I don't forget anybody. There are five populations. Parkinson's, of course. Ellen Bernstein-Ellis 12:53 Perfect. So that's your primary aim. Do you want to speak to any secondary or additional goals for your project? Arla Good 13:03 The second major pillar of this grant is to advocate and share the information with these communities. So, how can we facilitate the transfer of this knowledge? We've started a TikTok channel, so you can watch videos. We have a newsletter and a website that's continuously being updated with all the new information. We want to develop best practice guides to share with these communities about what we've learned and how these types of choirs can be run. And really, just mobilize the network of partners so that we're ensuring the information is getting to the right community. Ellen Bernstein-Ellis 13:35 Wow. Well, I mentioned a moment ago that there's a 2020 article that you wrote with your colleagues, Kreutz, Choma, Fiocco, and Russo that describes the SingWell project protocol. It lays out your long term goals. Do you want to add anything else to what you've said about where this project is headed? Arla Good 13:54 Sure, the big picture of this project is that we have a network of choirs that are able to address the needs of these different populations. I want the network to be dense and thriving. The home of the grant is Canada. But of course, we have partners in the states, like Jessica, and in Europe and in New Zealand. So to have this global network of choirs that people can have access to, and to advocate for a social prescription model in healthcare. Have doctors prescribing these choirs, and this network is available for doctors to see, okay, here's the closest choir to you. So, in some ways, this is a third goal of the project is to be building this case for the social prescription of singing. Ellen Bernstein-Ellis 14:41 Before we go too much further, I want to acknowledge that you picked a wonderful aphasia lead, Dr. Jessica Richardson. That's your role, right? We haven't given you a chance to explain your role with SingWell. Do you want to say anything about that Jessica? Jessica Richardson 14:58 Yeah, sure. I'm still learning about my role. Overall, I know theme leaders, in general, were charged with overseeing research directions for their theme. Aphasias, the theme that I'm leader of, and then monitoring progress of research projects and the direction of that. So far, it's mostly involved some advising of team members and reviewing and giving feedback of grant applications. I'm supposed to be doing more on the social and networking end and I hope to be able to make more that more of a priority next year, but I do think this podcast counts. So thank you for that. Ellen Bernstein-Ellis 15:33 Well, you did a wonderful presentation. I should be transparent, I was invited to be on the Advisory Committee of SingWell, and I got to hear your first presentation at the first project meeting where each team leader explained their focus and endeavor. I was so excited to hear the way you presented the information on aphasia, because again, we know that for some people, aphasia is not a well-known name or word. And even though this is a very educated group, and I think everybody, all the leaders know about aphasia, but it was nice to see you present and put on the table some of the challenges and importance of doing this research. One of the things that really attracted me when reading about that 2020 article is that you talk about SingWell having an ability versus disability focus early, Arla, could you elaborate on that? Arla Good 16:22 Our groups are open to anybody, regardless of their musical, vocal or hearing abilities. And we compare it often to the typical talk-based support groups that focuses on challenges and deficits. Of course, there's a time and place, these can provide a lot of benefit for people living in these communities. So, this isn't a replacement for these types of support groups, But, singing is a strength-based activity. They're working together to create a beautiful sound and there's often a performance at the end that they're very proud of. We're challenging stigma, especially in a population like aphasia, where it would seem like, oh, you have aphasia, you can't sing? But, of course they can. We're challenging that stigma of who can sing and who can't sing. We find that it's just so enjoyable for these people to be coming and doing something strength- based and feeling good. Going back to that, quote I said at the beginning, right? To feel like there's more to their identity than a diagnosis. This is what keeps them coming back. Ellen Bernstein-Ellis 17:22 Beautifully said, and I can't help but think how that really connects with the life participation approach. There's no one better than Jessica, for me to throw that back out to her, and ask how she sees the connection between that. Jessica Richardson 17:37 Yes, absolutely. Their focus on ability and fighting loneliness and isolation and on social well-being is right in line with it. Because LPAA is really focusing on reengagement in life, on competence, rather than deficits, on inclusion, and also on raising the status of well-being measures to be just as important as other communication outcomes. I want to make sure we also bring up something from our Australian and New Zealand colleagues, the living successfully with aphasia framework, because it is also in line with LPAA and SingWell. I can say they have this alternative framework. They also don't want to talk about the deficit or disability. It doesn't try to ignore or even minimize the aphasia, but it emphasizes positive factors, like independence, meaningful relationships, meaningful contributions, like you know that performance. So there's just so much value and so much alignment with what Aphasia Access listeners and members really care about. Ellen Bernstein-Ellis 18:44 That's a great transition for what I was thinking about next. I was very excited to see people talking about the 2018 review by Baker, Worrall, Rose and colleagues that identifies aphasia choirs as a level one treatment in the step psychological care model for managing depression in aphasia. So that's really powerful to me, and we're starting to see more research come out looking at the impact of participating in aphasia choirs. I'm really excited to see some of this initial research coming out. Maybe you can address what some of the gaps in the literature might be when it comes to group singing? And its impact on well-being. Maybe Arla, we can start with that and then Jessica, you can jump in and address specifically communication and aphasia choirs. Arla, do you want to start out? Arla Good 19:35 This is a very exciting time, like you said, there is research that is starting to come out. People are starting to study choirs as a way of achieving social well-being, psychological well-being and so the field is ripe and ready for some good robust scientific research. Most of the studies that are coming out have really small sample sizes. It's hard to get groups together, and they often lack comparison groups. So what I think SingWell is going to do is help understand the mechanisms and what is so great about singing and what singing contributes. The other thing I'd like to mention is that with SingWell, our approach is a bit unique compared to what some of the other research researchers are doing, in that we're adopting a very hands-off approach to choir. So we're letting choir directors have the autonomy to organize based on their own philosophies, their expertise, and the context of their choirs. So we call it choir in its natural habitat. And this is giving us the opportunity to explore group effects. What approach is the choir director taking and what's working, what's not working? And to have this large sample of different types of choirs, we can learn a lot from this number, this type of research project as well. Ellen Bernstein-Ellis 20:54 What I really love about that is getting to know some of these wonderful colleagues through Aphasia Choirs Go Global and hearing about what their rehearsals and goals look like. There are some amazing similarities, just like saying, “You're doing that in Hungary? But we're doing that here, too.” And there are some wonderful differences. I really firmly believe that there are a variety of ways to do this very successfully, just like there are a variety of ways to run successful aphasia groups, but there's going to be some core ingredients that we need to understand better. Just before I go too far away from this, how about you? Do you want to speak to anything we need to learn in the literature about aphasia choirs? Jessica Richardson 21:35 Yeah, I mean, I don't think I'm saying too much different than Arla. Arla, may want to follow up. But the main gap is that we just don't have enough evidence. And we don't have enough, like she said, solid methodology, high fidelity, to even support its efficacy to convince stakeholders, third party payers, etc. Anecdotal evidence is great, and YouTube videos that we create are also great, but it's not enough. And even more and more choirs popping up around the world, it's not enough. We need that strong research base to convince the people that need convincing. SingWell is hoping to add to that through its pilot grants, through its methodology that they share for people to use. And I'm hopeful that other organizations, you know, like Aphasia Choirs Go Global, can link up at some point with saying, “Well, I'm excited about communities like that that are also supportive of researching choirs.” Arla, think I saw you're wanting to follow up. Arla Good 22:31 I just wanted to add to something that Ellen had said about the power and diversity and having these different perspectives. And another goal of SingWell is to create, and it's up on the website already, it's a work in progress, it's going to continue growing, but a menu of options for choir directors who are looking to start a choir like this. Like if you want this kind of goal, here are some tips. So, if it's a social choir, you might want to configure the room in a circle. But if you have musical goals, maybe you want to separate your sopranos, your altos, tenors, and your bass. It's not one prescribed method. It's a menu of items that we're hoping we can through, this diversity of our network, that we can clarify for people who are trying to start a choir for themselves. Ellen Bernstein-Ellis 23:19 I love that because I can hear in my head right now, Aura Kagan saying over and over again that the life participation approach is not a prescriptive approach. But rather, you're always looking at what is the best fit for your needs. Jessica, your head is nodding, so do you want to add anything? Jessica Richardson 23:37 It's a way to shift your whole entire perspective and your framework. And that's what I love about it. Ellen Bernstein-Ellis 23:44 We'll just go back to that 2020 article for a moment because I really liked that article. You and your authors describe four measures of well-being and there are potential neuroendocrinological, that's really a lot of syllables in here, but I'll try to say it again, neuroendocrinological underpinnings, Arla Good The hormones--- Ellen Bernstein-Ellis Oh, that's better, thank you, the hormones, too. Could you just take a moment and please share what these four measures of well-being and their hormonal underpinnings might be? Arla Good 24:11 For sure. The first one is connection, the connectedness outcome. So we're asking self-report measures of how connected people feel. But we're also measuring oxytocin, which is a hormone that's typically associated with social bonding. The second measure is stress. And again, we're asking self-report measures, but we're also looking at cortisol, which is a hormone associated with stress. The third measure is pain. And this one's a little bit more complex, because we're measuring pain thresholds. Really, it sounds scary, but what we do is apply pressure to the finger and people tell us when it feels uncomfortable. So it's actually well before anyone's experiencing pain. But we're thinking that this might be a proxy for beta endorphin release. So that's the underpinning there. And then the last outcome is mood. This is also a self-report measure. And one of the types of analyses that we're running is we want to see what's contributing to an improved mood. Is it about the cortisol? Is it about just like deep breathing and feeling relaxed? Is it that or is there something special happening when they feel the rush of oxytocin and social connectedness? The jury's still out. These are super preliminary data at this point, especially with oxytocin, there's so much to learn. But those are some of the hormones, the sociobiological underpinnings that we're exploring. Ellen Bernstein-Ellis 25:31 That makes for some really exciting research and the way you frame things, SingWell is supporting grants, maybe you could comment on how its biopsychosocial framework influences the methods and outcome measures that you want to adopt. Arla Good 25:48 Sure, we do provide guidelines and suggestions for measures. Jessica alluded to this. We have it all up on the website, if anyone else wants to run a study like this. And then we have some that we're requiring of any study that's going to be funded through SingWell. And this is so we can address this small sample size problem in the literature. So the grant runs for six more years. It's a seven year grant. And at the end, we're going to merge all the data together for one mega study. We want to have some consistency across the studies, so we do have some that are required. And then we have this typical SingWell design. We're offering support for our research team, from what a project could look like. Ellen Bernstein-Ellis 26:28 Well, this podcast typically has a wonderful diverse demographic, but it includes researchers. and clinical researchers who collaborate. So, let's take a moment and have you describe the grant review process and the dates for the next cycle, just in case people want to learn more. Arla Good 26:45 Sure, so we are accepting grants from SingWell members. So the first step is to become a SingWell member. There is an application process on the website. We have an executive committee that reviews the applications twice a year, the next one is in scheduled for November. There's some time to get the application together. Once you're in as a member, the application for receiving funding is actually quite simple. It's basically just an explanation of the project and then it will undergo a review process. Jessica is actually one of our reviewers, so she can speak to what it was like to be a reviewer, Ellen Bernstein-Ellis 27:21 That would be great because, Jessica, when you and I chatted about it briefly, I've never heard a reviewer be so excited about being supportive in this process. So please share a little bit more because I thought your perspective was so refreshing and positive. Jessica Richardson 27:36 I have to say too, I have definitely benefited from having some amazing reviewers in my own lifetime. I definitely have to point out one who was so impactful, Mary Boyle, her review, it was so thorough, and it was so intense, but it elevated one of my first endeavors into discourse analysis to just like a different level. And just the way that she treated it as a way to help shape, she was so invested, in just making sure that we were the best product out there. I learned what the world needed to learn. I definitely learned a lot from that experience and from other reviewers like her that I've benefited from. As a reviewer, whenever I review anything, I try to keep that same spirit. So when I was doing SingWell reviews, I made sure that I revisited the parent grant. I did a really good, thorough reread. I provided feedback and critiques from the lens of how does this fit with SingWell's aims? And, how can it be shaped to serve those aims if it isn't quite there yet? So it's never like, “Ah, no, this is so far off”, it was just like, “Oh, where can we make a connection to help it fit?” Then trying to provide a review that would be a recipe for success, if not for this submission cycle, then for the next. And as a submitter, even though I mean, we didn't have a meeting to like all take this approach. But I felt that the feedback that I received was really in that same spirit. And so I love feedback in general. I don't always love the rejection that comes with it. But I do love stepping outside of myself and learning from that different perspective. And I've really just felt that this thing while reviewers were invested, and were really just interested in shaping submissions to success, Ellen Bernstein-Ellis 29:24 That's really worthwhile, right? So you get something, even if you're not going to get funding. You still get to come away with something that's valuable, which is that feedback. We've been talking about measures and I'm really interested in that as a topic. Jessica, could you take a moment and share a little bit about how SingWell's pre/post measures are being adopted for aphasia? We all know that's some of the challenges. Sometimes, some of the measures that we use for mood, connectivity, or stress are not always aphasia-friendly. So what does that process look like? Jessica Richardson 29:59 I will say they did their homework at the top end, even before the proposal was submitted. Really having you on the advisory board, and I was able to give some feedback on some of the measures. Some of the measures they've already selected were specific to aphasia. For Parkinson's disease, there are Parkinson's disease specific measures and for stuttering, specific measures. And for aphasia, they picked ones that are already aphasia-friendly. What I was super excited about too, is that they included discourse without me asking. It was already there. I think we helped build it to be a better discourse sample and we've added our own. So it's already in there as their set of required and preferred measures. But the other thing is that the investigator, or investigators, have a lot of latitude, according to your knowledge of the clinical population that you're working with, to add outcomes that you feel are relevant. That's a pretty exciting aspect of getting these pilot funds. Ellen Bernstein-Ellis 30:58 So there's both some core suggested measures, but there's a lot of latitude for making sure that you're picking measures that will capture and are appropriate to your particular focus of your projects. That's great. Absolutely. Jessica Richardson 31:09 I definitely feel that if there were any big issue that we needed to bring up, we would just talk to Arla and Frank, and they would be receptive. Ellen Bernstein-Ellis 31:20 I've been very intrigued and interested in attempts to measure social connectedness as an outcome measure. You speak about it in your article, about the value of social bonding and the way music seems to be a really good mechanism to efficiently create social bonding. Is there something about choir that makes this factor, this social connectedness, different from being part of other groups? How are you going to even capture this this factor? Who wants to take that one? Arla Good 31:50 I do, I can talk, we can do another podcast on this one. Jessica Richardson 31:55 It's my turn, Arla. I'm just kidding (laughter). Ellen Bernstein-Ellis 32:01 You can both have a turn. You go first, Arla, And then Jessica, I think you will probably add, Jessica Richardson 32:04 I'm totally kidding (laughter). Ellen Bernstein-Ellis 32:06 Go ahead, Arla. Arla Good 32:07 This is what I did my dissertation on. I truly believe in the power of group music making. So singing is just an easy, accessible, scalable way to get people to move together. It's consistent with an evolutionary account that song and dance was used by small groups to promote social bonding and group resiliency. I've seen the term collective effervescence in these types of writings. When we moved together, it was like a replacement for in our great ape ancestors, they were one on one grooming, picking up the nits in each other's fur. Human groups became too large and too complex to do one on one ways of social bonding. And so we needed to develop a way to bond larger groups rapidly. And the idea here is that movement synchrony, so moving together in precise time, was one way of connecting individuals, creating a group bond. Singing is just a fun way of doing that. I've been studying this for about 15 years and trying to understand. We've pared it down, right down to just tapping along with a metronome, and seeing these types of cooperation outcomes and feelings of social bonding, connectedness. I do think there's something special, maybe not singing specifically, but activities that involve movement synchrony. We could talk about drumming, we could talk about dance, I think that there is a special ingredient in these types of activities that promote social bonds. Jessica Richardson 33:37 There's been some of us even looking at chanting, there's research about that as well. Arla Good We should do a SingWell study on chanting! Ellen Bernstein-Ellis 33:43 Jessica, what else do you want to add about what is important about capturing social connectedness? Or, how do we capture social connectedness? Jessica Richardson 33:53 I think I'll answer the first part, which is, what is special about thinking about it and capturing it. It's something that we've slowly lost over decades and generations, the communal supports. Our communities are weakened, we're more spread out. It's also a way of bringing something back that has been so essential for so long. We've weakened it with technology, with just all the progress that we've made. It's a way to bring something that is very primitive and very essential back. So, that doesn't totally answer your question, though. Ellen Bernstein-Ellis 34:31 When we think about the isolation related to aphasia and the loss of friendship, and some of the wonderful research that's coming out about the value and impact of friendship on aphasia, and then, you think about choirs and some of this research--I believe choir is identified as the number one most popular adult hobby/activity. I think more people are involved in choirs as an adult. It's not the only meaningful activity, but it's a very long standing, well developed one, Jessica Richardson 35:03 We have to figure out how to get the people though who will not touch a choir with a 10 foot pole? Ellen Bernstein-Ellis 35:08 Well, we will continue to do the work on the other groups, right, that suits them very well. You know, be it a book club, or a gardening group, or a pottery class, or many, many, many other choices. Jessica Richardson 35:21 Or a bell choir? Ellen Bernstein-Ellis 35:24 Bell choirs are great, too. Do either of you want to speak to what type of measures captures social connectedness or what you're using, or suggesting people try to use, for SingWell projects? Jessica Richardson 35:38 I think Arla already captured some of those with those markers that she was talking about earlier. Hormonal markers. But the self-report questionnaires, and that perspective. There's other biomarkers that can very easily be obtained, just from your spirit. So I think that's going in the right direction, for sure. Arla Good 35:59 Yeah, we've also looked at behavioral measures in the past like strategic decision making games, economic decision making games, and just seeing if people trust each other, and whether they're willing to share with each other. We've asked people how attractive they think the other people are. Questions like this that are capturing the formation of a group, whether they're willing to share with their in-group. It's a question of in-group and out-group, and what are some of the effects of the in-group. Jessica Richardson 36:26 And we're definitely exploring too, because we do a lot of neurophysiological recording in my lab. Is there a place for EEG here? Is there a place for fNIRS, especially with fNIRS, because they can actually be doing these things. They can be participating in choir, we can be measuring things in real time. While they're doing that, with the fNIRS-like sports packs, so sorry, fNIRS is functional near-infrared spectroscopy in case some of the listeners aren't sure. Ellen Bernstein-Ellis 36:52 I needed help with that one too. Thank you. I'm thinking about some of the work done by Tom Sather that talks about the sense of flow and its contribution to eudaimonic well-being, right? I think that's a key piece of what SingWell is looking at as well. It's exciting to look at all these different measures, and all these different pillars that you are presenting today. And if people want to find out more about SingWell, do you want to say something about your website, what they might find if they were to go there? Arla Good 37:25 Yes, go to the website, SingWell.org, pretty easy to remember. And on the website, you'll find all the resources to run a research study, to apply to be a member. We have resources for choir directors who are looking to start their own choir, we have opportunities to get involved as research participants if you're someone living with aphasia, or other communication challenges. There's lots of opportunities to get involved on the website. And you can sign up for our newsletter and receive the updates as they come and check out our website. Ellen Bernstein-Ellis 37:57 That's great. I certainly have been watching it develop. And I think it has a lot of really helpful resources. I appreciate the work that's been put into that. How do people get involved in the SingWell project? You mentioned earlier about becoming a member. Is there anything else you want to add about becoming engaged with SingWell? Arla Good 38:18 I think the ways to become involved, either becoming a member or starting a choir using the resources, or like I said, signing up for the newsletter just to stay engaged. And as a participant, of course, doing the surveys or signing up for a choir if you're one of the participants called. Ellen Bernstein-Ellis 38:35 Thank you. I'm was wondering if you'd share with the listeners any sample projects that are underway. Arla Good 38:46 For sure. So we have five funded studies this year. We have one ChantWell, which Jessica spoke about, assessing the benefits of chanting for breathing disorders. That's taking place in Australia. The effects of online group singing program for older adults with breathing disorders on their lung health, functional capacity, cognition, quality of life, communication skills and social inclusion. That is in Quebec, Canada. The third study, the group singing to support well-being and communication members of Treble Tremors. That's a Parkinson's choir taking place in Prince Edward Island, Canada. The fourth is how important is the group in group singing, so more of a theoretical question looking at group singing versus individual singing, an unbiased investigation of group singing benefits for well-being and that's also in Quebec. And then last but not least, I saved it for last, is our very own Jessica Richardson's group singing to improve communication and well-being for persons with aphasia or Parkinson's disease. So I thought I might let Jessica share, if she's open to sharing some of what the research study will entail. Jessica Richardson 39:53 Oh, yes, thank you. When we first started our neuro choir, I had envisioned it as being an aphasia choir. And we had so much need in the community, from people with other types of brain injury. Our Parkinson's Disease Association, too, has really been reaching out ever since I've moved here. They have a group actually, they're called the Movers and Shakers, which I really love. So, we have a pretty healthy aphasia cohort of people who are interested, who also, you know, taking a break and only doing things virtually if they are interested, you know, since COVID. And then we have our Parkinson's cohort here as well, the Movers and Shakers, were following the suggested study design, it's a 12 week group singing intervention. They have suggestions for different outcome measures at different timescales, we're following that and adding our own outcome measures that we also feel are relevant. So we have those measures for communication and well-being, including the well-being biomarkers through the saliva. As she mentioned, already, we have latitude for the choir director, like who we want to pick and what she or he wants to do. We already have that person picked out. And we already know, and have all of that stuff figured out. There is some guidance, but again, flexibility for our session programming. And we have the choices over the homework programming, as well. We are really looking at this choir in the wild, and looking at those outcomes with their measures. So we're excited about it. Ellen Bernstein-Ellis 41:22 I think you've just thought of a great name for a future aphasia choir, which is a “neuro choir choir in the wild” Jessica Richardson 41:30 Well, out here, we're a choir in the wild, wild west. Ellen Bernstein-Ellis 41:34 There you go. Absolutely. What have been some of the most surprising findings of the benefits of singing so far that have come in through the SingWell project? Either of you want to take that on? Arla Good 41:46 I don't know if it's the most surprising, but it's definitely the most exciting. I'm excited to continue unpacking what's happening with oxytocin, I think it's a pretty exciting hormone, it's pretty hot right now. It's typically associated with being like a love hormone. They call it associated with sex, and it's associated with mother-infant bonding. If we can find a way that's not mother-infant or pair bonding to release oxytocin, that's very exciting. If group singing is one of those ways to promote this sense of “I don't know where I end and you begin, and we're one” and all those loving feelings. As Jessica mentioned, the missing piece, and how we relate to each other in a society, choir might be an answer to that. I'm really excited about the oxytocin outcome measure. Again, it's still very early, I don't want to say definitively what's happening, but it's a pretty exciting piece. Jessica Richardson 42:45 I have a future doctoral student that's going to be working on this. That is the part she's most interested in as well.. Ellen Bernstein-Ellis 42:52 So there are some really good things that, hopefully, will continue to tell us what some of these benefits are and that it's important to fund and connect people to these types of activities. You said, this is like year one or two of a 6 year project, was that right? Or is it seven year? Arla Good 43:09 It's seven year. Ellen Bernstein-Ellis 43:10 So what is your hope for the future of the SingWell project? Arla Good 43:15 The secondary goals would be the hope for the future, of actually creating change in the communities and getting people to think outside the box of providing care. Is there a choir that can be prescribed nearby? Is there a way to train these choir directors so that they have the correct training for this specific population? So drawing from the knowledge from speech- language therapy, from choir direction, from music therapy- Ellen Bernstein-Ellis 43:42 Music therapy, right. Arla Good 43:43 Of course, of course. So creating an accreditation program and training choir directors to lead choirs like this, and having this army of choir directors around the world that are doing this. So, this is a big goal. But that's what I hope to see. Ellen Bernstein-Ellis 44:00 That's fantastic. And I think there's some researchers who are really working hard at looking at protocols and asking these questions. And I know, I've been inspired by some of the work that Ali Talmage is doing in New Zealand that's looking at some of these questions. And, Jessica, do you want to add what's your hope is as aphasia lead? Or, what you're thinking about for the SingWell project that you're excited about? Jessica Richardson 44:21 We have to generate that evidence that we need and mentioning again, those 10 foot pole people, to reach out to let people know that choirs aren't just for people who think that they can sing. We definitely have had some very energetic and enthusiastic choir members who think that they can sing and cannot, and they're still showing up. Maybe you're the one who thinks that choirs aren't for you. If we can generate enough energy, inertia, and evidence to convince those that it might be worth giving a try. I think some of them are going to be surprised that they enjoy it and “oh, I can sing.” So I think that to me is a future hoped for outcome. And then again, seeing it spread out to other gardening groups, other yoga groups, all these other things that we know are happening within Aphasia Access members and beyond to see, okay, there's this methodology. This is what's used to study something like this, let's apply it also so that its efficacy data for these other approaches that we know and we see can be helpful, but we don't have enough proof to have someone prescribe it and to get those stakeholders involved. Ellen Bernstein-Ellis 45:33 Yes. And we talked about the importance of some of the work that's being done with mental health and aphasia and how some of the information that you're pursuing could really tie in and help us support and get more work in that area as well. So really exciting. I can't believe we have to wrap up already. I agree with you all, that we could just keep talking on this one. But let's just end on this note, I would like to find out from both of you. If you had to pick just one thing that we need to achieve urgently as a community of providers and professionals, what would that one thing be? What would you like to speak to? At the end of this discussion we've had today and Arla, you get to go first again. Arla Good 46:15 The one thing we need to achieve urgently is to find a way to address people's needs in a more holistic way. And to see the human as a whole, that it's not just this piece and this piece and this piece, but all of it together? And how can we do that? How can we communicate better as practitioners, as researchers, so that we can address these needs more holistically? Ellen Bernstein-Ellis 46:36 Thank you. Thank you. And Jessica, what would you like to say? Jessica Richardson 46:41 I could just say ditto. I totally agree. So the end. But I think the other part is from a clinician standpoint. What I hear most from colleagues that are out there in the wild, and former students, is that they want the “How to” info which is perfect, because, SingWell has a knowledge mobilization aim, and the exact aim of that is to develop and share best practice guides, which you know, are already mentioned, choir sustainability guides, how to fund it, how to keep it going. Really important. And they're going to update these regularly. It's going to be available in lots of languages. So that's something I'm especially excited for, for our community, because I know so many people who want to start a choir, but it feels too big and intimidating, and maybe they don't feel like they have the musical chops. But this will really help them get over that hump to get started and will address that need. And that desire, that's already there, in a big way. Ellen Bernstein-Ellis 47:42 Thank you. I'm so appreciative that you both made this happen today. It was complicated schedules. And I just really, really appreciate want to thank you for being our guests for this podcast. It was so much fun. I'm excited to follow the SingWell project over the next seven years and see what continues to grow and develop. So for more information on Aphasia Access, and to access our growing library of materials, please go to www.aphasiaaccess.org And if you have an idea for a future podcast series topic, just email us at info@aphasiaaccess.org And thanks again for your ongoing support of Aphasia Access. Arla, Jessica, thank you so much. Thank you. References and Resources UNM Neuro Choir: https://www.youtube.com/watch?v=zQuamJgTVj8&list=PLy586K9YzXUzyMXOOQPNz3RkfRZRqtR-L&index=5 https://www.youtube.com/watch?v=guU_uRaFbHI&list=PLy586K9YzXUzyMXOOQPNz3RkfRZRqtR-L&index=6 https://www.youtube.com/watch?v=Q4_0Xd7HNoM&list=PLy586K9YzXUzyMXOOQPNz3RkfRZRqtR-L&index=7 www.singwell.org Good, A., Kreutz, G., Choma, B., Fiocco, A., Russo, F., & World Health Organization. (2020). The SingWell project protocol: the road to understanding the benefits of group singing in older adults. Public Health Panorama, 6(1), 141-146. Good, A., & Russo, F. A. (2022). Changes in mood, oxytocin, and cortisol following group and individual singing: A pilot study. Psychology of Music, 50(4), 1340-1347.
Interviewer I'm Ellen Bernstein-Ellis, Program Specialist and Clinical Supervisor for the Aphasia Treatment Program at Cal State East Bay and a member of the Aphasia Access Podcast Working Group. AA's strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources. Today, I have the honor of speaking with Dr. Jamie Lee who was selected as a 2022 Tavistock Distinguished Scholar. We'll discuss her research interests and do a deeper dive into her work involving the study of texting behaviors of individuals with aphasia and her efforts to develop an outcome measure that looks at success at the transactional level of message exchange. As we frame our podcast episodes in terms of the Gap Areas identified in the 2017 Aphasia Access State of Aphasia Report by Nina Simmons-Mackie, today's episode best addresses Gap areas: Insufficient attention to life participation across the continuum of care; Insufficient training and protocols or guidelines to aid implementation of participation-oriented intervention across the continuum of care; Insufficient or absent communication access for people with aphasia or other communication barriers For more information about the Gap areas, you can listen to episode #62 with Dr. Liz Hoover or go to the Aphasia Access website. Guest bio Jaime Lee is an Associate Professor in the department of Communication Sciences and Disorders at James Madison University. Jaime's clinical experience goes back nearly 20 years when she worked as an inpatient rehab SLP at the Rehabilitation Institute of Chicago (now Shirley Ryan Ability Lab). She later worked for several years as a Research SLP in Leora Cherney's Center for Aphasia Research and Treatment. Jaime earned her PhD at the University of Oregon, where she studied with McKay Sohlberg. Her research interests have included evaluating computer-delivered treatments to improve language skills in aphasia, including script training and ORLA, examining facilitation of aphasia groups, and most recently, exploring text messaging to improve participation, social connection and quality of life in IWA. Listener Take-aways In today's episode you will: Learn about why texting might be a beneficial communication mode for IwA Explore the reasons it's important to consider the communication partner in the texting dyad Find out more about measures examining texting behaviors, like the Texting Transactional Success (TTS) tool. Consider how Conversational Analysis may be helpful in understanding texting interactions Edited show notes Ellen Bernstein-Ellis Jamie, welcome to the podcast today. I'm so excited that we finally get to talk to you. And I want to offer a shout out because you mentioned two mentors and colleagues who I just value so much, McKay Solberg and Leora Cherney, and I'm so excited that you've also had them as mentors. Jaime Lee 02:44 Thanks, Ellen. It's really great to talk with you today. And speaking of shout outs, I feel like I have to give you a shout out because I was so excited to meet you earlier this summer at IARC. We met at a breakfast. And it was exciting because I got to tell you that I assigned to my students your efficacy of aphasia group paper, so it was really fun to finally meet you in person. Ellen Bernstein-Ellis 03:11 Thank you, that is the paper that Roberta Elman was first author on. I was really proud to be part of that. I was excited to get to come over and congratulate you at the breakfast on your Tavistock award. I think it's very, very deserving. And I'm excited today that we can explore your work and get to know each other better. And I'm just going to start with this question about the Tavistock. Can you share with our listeners what you think the benefits of the Tavistock Distinguished Scholar Award will be to your work? Jaime Lee 03:43 Sure, I think first off being selected as a Tavistock Distinguished Scholar has been really validating of my work in terms of research and scholarship. It's made me feel like I'm on the right track. And at least maybe I'm asking the right kinds of questions. And it's also really meaningful to receive an award that recognizes my teaching and impact on students. And I was thinking about this and a conversation that I had with my PhD mentor McKay Solberg. And it was early into my PhD when we were talking about the impact of teaching and how important it was, where she had said that when we work as a clinician, we're working directly with clients and patients were hopefully able to have a really positive meaningful impact. But when we teach, and we train the next generation of clinicians, you know, we have this even greater impact on all of the people that our students will eventually work with throughout their career. And so that's just huge. Ellen Bernstein-Ellis 04:51 It really is huge. And I have to say I went to grad school with McKay and that sounds like something she would say, absolutely, her value of teaching. I just want to do a quick shout out to Aphasia Access, because I think they also recognize and value the importance of teaching. They have shown that commitment by their LPAA curricular modules that they developed and make accessible to Aphasia Access members, so people can bring content right into their coursework, which is helpful because it takes so much time to prepare these materials. So, if you haven't heard of these curricular modules yet, please go to the website and check them out. So yes, I'm so glad that you feel your work is validated. It's really important to validate our young researchers. I think there's an opportunity to expand who you meet during this year. Is that true? Jaime Lee 05:40 That is already true. This honor has already led to growing connections with other aphasia scholars and getting more involved with Aphasia Access. I'm excited to share that I'll be chairing next year's 2023 Aphasia Access Leadership Summit together with colleagues Esther Kim and Gretchen Szabo. We're really enthusiastic about putting together a meaningful and inspiring program. I am just really grateful for the opportunity to have a leadership role in the conference. Ellen Bernstein-Ellis 06:17 Wow, that's a fantastic team. And I, again, will encourage our listeners, if you've never been to a Aphasia Access Leadership Summit, it is worth going to and everybody is welcomed. We've had several podcast guests who have said that it has been a game changer for them-- their first attendance at the Leadership Summit. So, we'll be hearing more about that. Well, I want to start our interview today by laying some foundation for your work with texting and developing some outcome measures for treatment that captures transactional exchange in individuals with aphasia. And let me just ask what piqued your interest in this area? Jaime Lee 06:57 Yeah, thanks. Well, before I got interested specifically, in texting, I had this amazing opportunity to work as a research SLP with Leora Cherney and her Center for Aphasia Research and Treatment. And we all know Leora well for the contributions she's made to our field. At that time, she had developed ORLA, oral reading for language and aphasia, and a computerized version, and also a computerized version of aphasia scripts for script training. And these were treatments that not only improve language abilities in people with aphasia, but I really had this front row seat to seeing how her interventions really made a difference in the lives of people with aphasia, and help them reengage in the activities that they wanted to pursue-- reading for pleasure and being able to converse about topics that they want to do with their script training. So at the same time, I was gaining these really valuable research skills and understanding more about how to evaluate treatment. I was also able to start learning how to facilitate aphasia groups because Leora has this amazing aphasia community that she developed at what was then RIC. I'm just really grateful for the opportunity I had to have Leora as a mentor, and now as a collaborator. And her work really helped orient me to research questions that address the needs of people with aphasia, and to this importance of building aphasia community. Ellen Bernstein-Ellis 08:37 Wow, that sounds like a really amazing opportunity. And I think it's wonderful that you've got to have Leora as a mentor and to develop those interests. Then look at where you're taking it now. So that's really exciting to talk about with you today. Jaime Lee 08:54 As for the texting interest that really started after I earned my PhD and was back at the Rehab Institute, now Shirley Ryan Ability Lab, Leora was awarded a NIDILRR field initiated grant and I served as a co-investigator on this grant. It was a randomized, controlled trial, evaluating ORLA, combined with sentence level writing. The two arms of the trial were looking at ORLA plus writing using a handwriting modality, versus ORLA combined with electronic writing or we kind of thought about this as texting. So we call that arm T-write. And ORLA was originally designed to improve reading comprehension, but we know from some of Leora's work that there were also these nice cross-modal language improvements, including improvements in written expression. This was a study where we really were comparing two different arms, two different writing modalities, with some secondary interest in seeing if the participants who were randomized to practice electronic writing, would those improvements potentially carry over into actual texting, and perhaps even changes in social connectedness? Ellen Bernstein-Ellis 10:15 Those are great questions to look at. Interest in exploring texting's role in communication has just been growing and growing since you initiated this very early study. Jamie, would you like to explain how you actually gathered data on participants texting behaviors? How did that work? Jaime Lee 10:32 Yes. So we were very fortunate that the participants in this trial, in the T-write study, consented to have us extract and take a look at their real texting data from their mobile phones prior to starting the treatment. So, for those who consented, and everyone, I think we had 60 participants in the trial, and every single participant was open to letting us look at their texts and record them. We recorded a week's worth of text messages between the participant and their contacts at baseline, and then again at a follow up point after the treatment that they were assigned to. And that was so that maybe we could look for some potential changes related to participating in the treatment. So maybe we would see if they were texting more, or if they had more contacts, or maybe they might even be using some of the same sentences that were trained in the ORLA treatment. We haven't quite looked at that, the trial just finished so we haven't looked at those pre/ post data. But when my colleagues at Shirley Ryan and I started collecting these texting data, we realized there were some really interesting things to be learned from these texts. And there have been a couple of studies, we know Pagie Beeson's work, she did a T-CART study on texting, right? And later with her colleague, Mira Fein. So we had some texting studies, but nothing that really reported on how people with aphasia were texting in their everyday lives. Ellen Bernstein-Ellis 12:08 Well, Jamie, do you want to share what you learned about how individuals with aphasia texts are different from individuals without aphasia? Jaime Lee 12:15 We saw that first, people with aphasia do text, there were messages to be recorded. I think only a couple of participants in the trial didn't have any text messages. But we took a look at the first 20 people to enroll in the trial. We actually have a paper out-- my collaborator, Laura Kinsey is the first author. This is a descriptive paper where we describe the sample, 20 people, both fluent aphasia and nonfluent aphasia, a range of ages from mid 30s up to 72. And one striking finding, but maybe not too surprising for listeners, is that the participants with aphasia in our sample texted much less frequently than neurologically healthy adults, where we compared our findings to Pew Research data on texting. And our sample, if we took an average of our 20 participants and look at their texts sent and received over a week, over the seven days, they exchanged an average of about 40 texts over the week. Adults without aphasia, send and receive 41.5 texts a day. Ellen Bernstein-Ellis 13:36 Wow, that's quite a difference. Right? Jaime Lee 13:39 Yes, even knowing that younger people tend to text more frequently than older adults. Even if we look at our youngest participants in that sample who were in their mid 30s, they were sending and receiving text much less frequently than the age matched Pew data. Ellen Bernstein-Ellis 13:56 Okay, now, I want to let our listeners know that we're going to have the citation for the Kinsey et al. article that you just mentioned in our show notes. How can we situate addressing texting as a clinical goal within the life participation approach to aphasia? Jaime Lee 14:14 I love this question. And it was kind of surprising from the descriptive paper, that texting activity, so how many texts participants were sending and receiving, was not correlated with overall severity of aphasia or severity of writing impairment? Ellen Bernstein-Ellis I'm surprised by that. Were you? Jaime Lee Yes, we thought that there would be a relationship. But in other words, having severe aphasia was not associated with texting less. And we recognize, it's dangerous to draw too many conclusions from a such a small sample. But a major takeaway, at least an aha moment for us, was that we can't make assumptions about texting behaviors based on participants' language impairments, also based on their age, their gender. You know, in fact, our oldest participant in the sample, who was 72, was actually most active texter. He sent and received 170 texts over the week period. Ellen Bernstein-Ellis 15:22 Wow, that does blow assumptions out of the water there, Jamie. So that's a really good reminder that this to be individualized with that person at the center? Because you don't know. Jaime Lee 15:32 You don't know. Yeah. And I think it comes down to getting to know our clients and our patients, finding out if texting is important to them. And if it's something they'd like to be doing more of, or doing more effectively, and going from there. Ellen Bernstein-Ellis Wow, that makes a lot of sense. Jaime Lee Yeah, of course, some people didn't text, before their stroke and don't want to text. But given how popular texting has become as a form of communication, I think there are many, many people with aphasia, who would be interested in pursuing texting as a rehab goal. Ellen Bernstein-Ellis 16:08 Right? You really have to ask, right? Jaime Lee 16:11 Yes, actually, there's a story that comes to mind about a participant who was in the T-write study, who had stopped using her phone after her stroke. Her family had turned off service; she wasn't going to be making calls or texting. Ellen Bernstein-Ellis Well, I've seen that happen too many times. Jaime Lee And when she enrolled in the study, and she was a participant at Shirley Ryan, because we ran participants here at JMU and they ran participants in Chicago. And she was so excited. I heard from my colleagues that she went out and got a new phone so that she could use her phone to participate in the study. And then her follow up data. When we look at her real texts gathered after the study at the last assessment point, her text consists of her reaching out to all of her contacts with this new number, and saying hello, and getting in touch and in some cases, even explaining that she'd had a stroke and has aphasia. Ellen Bernstein-Ellis 17:13 Oh, well, that really reminds me of the value and importance of patient reported outcomes, because that may not be captured by a standardized test, per se, but man, is that impactful. Great story. Thank you for sharing that. So well, you've done a really nice job in your 2021 paper with Cherney that's cited in our show notes of addressing texting's role in popular culture and the role it's taking in terms of a communication mode. Would you explain some of the ways that conversation and texting are similar and ways that they're different? Jaime Lee 17:45 That is a great question, Ellen and a question I have spent a lot of time reading about and thinking about. And there is a great review of research that used conversation analysis (CA) to study online interactions. This is a review paper by Joanne Meredith from 2019. And what the review tells us is that there are many of the same organizing features of face to face conversation that are also present in our online communications. So we see things like turn taking, and we see conversation and texting or apps unfold in a sequence. So what CA refers to as sequential organization. We also see, just like in face to face conversation, there are some communication breakdowns or trouble sources in online communication. And sometimes we see the need for repair to resolve that breakdown. Ellen Bernstein-Ellis 18:45 Yeah, Absolutely. I'm just thinking about auto corrects there for a moment. Jaime Lee 18:51 And they can cause problems too. When the predictive text or the AutoCorrect is not what we meant to say that can cause a problem.Ellen Bernstein-Ellis 18:59 Absolutely. Those are good similarities, I get that. Jaime Lee 19:03 I think another big similarity is just about how conversation is co-constructed. It takes place between a person and a conversation partner and in texting, we have that too. We have a texting partner, or in the case of a group text, we have multiple partners. There's definitely similarities. And another big one is that purpose, I think we use conversation ultimately, and just like we're using texting to build connection, and that's really important Ellen Bernstein-Ellis 19:32 Yeah, I can really see all of those parallels. And there are some differences, I'm going to assume. Jaime Lee 19:39 Okay, yes, there are some definite interesting differences in terms of the social aspects of conversation. We do a lot in person, like demonstrating agreement, or giving a compliment, or an apology, or all of these nonverbal things we do like gesture and facial expression and laughter. Those nonverbal things help convey our stance, or affiliation, or connection. But in texting, we can't see each other. Right? So we have some different tools to show our stance, to show affiliation. What we're seeing is people using emojis and Bitmojis, and GIFs, even punctuation, and things like all capitals. We've all seen the all caps and felt like someone is yelling at us over text, that definitely conveys a specific tone, right? Ellen Bernstein-Ellis 20:34 I was just going to say emojis can be a real tool for people with aphasia, right? If the spelling is a barrier, at least they can convey something through an image. That's a real difference. Jaime Lee 20:45 Absolutely, I think some of the problematic things that can happen and the differences with texting have to do with sequencing and timing. Because people can send multiple texts, they can take multiple turns at once. And so you can respond to multiple texts at once, or that can lead to some confusion, I think we're seeing, but texting can also be asynchronous, so it's not necessarily expected that you would have to respond right away Ellen Bernstein-Ellis 21:16 So maybe giving a person a little more time to collect their thoughts before they feel like they have to respond versus in a person-to-person exchange where the pressure is on? Jaime Lee Absolutely, absolutely. Ellen Bernstein-Ellis Well, why might texting be a beneficial communication mode for individuals with aphasia, Jamie, because you have spelling challenges and all those other things. Jaime Lee 21:37 Yeah, I think it comes back to what you just said, Ellen, about having more time to read a message, having more time to be able to generate a response. I know that texting and other forms of electronic communication like email, can give users with memory or language problems a way to track and reread their messages. And in some cases, people might choose to bank responses that they can use later. We know this from actually some of Bonnie Todis and McKay Sohlberg's work looking at making email more accessible for users with cognitive impairment. So I think there are some really great tools available to people with aphasia to feel successful using texting. Ellen Bernstein-Ellis 22:30 That's great. I think banking messages is a really important strategy that we've used before, too. Jaime Lee 22:37 So there's all these other built-in features, that I'm still learning about that are in some mobile phones, that individuals with aphasia can potentially take advantage of. I think some features might be difficult, but there are things like we've just talked about, like the predictive text or the autocorrect. And then again, all these nonlexical tools, like the emojis and the GIFS and being able to link to a website or attach a photograph. I think this is a real advantage to communicating through text. Ellen Bernstein-Ellis 23:10 It lets you tell more of the story, sometimes. One of my members talks about when his spelling becomes a barrier, he just says the word and then that speech-to-text is really helpful. It's just one more support, I guess. Jaime Lee 23:24 Yes. And we're needing to find out a little bit more about the features that people are already using, and maybe features that people don't know about, but that they would like to use like that speech-to-text. That's a great point. Ellen Bernstein-Ellis 23:37 Well, how did you end up wanting to study texting for more than an amount of use or accuracy? In other words, what led you to studying transaction? Maybe we can start with a definition of transaction for our listeners? Jaime Lee 23:51 Sure. Transaction in the context of communication is the exchange of information. So it involves understanding and expression of meaningful messages and content. And this is a definition that actually comes from Brown and Yule's concepts of transaction and interaction and communication. So Brown, and Yule tell us that transaction again, is this exchange of content, whereas interaction pertains to the more social aspects of communication. Ellen Bernstein-Ellis 24:26 Okay, thank you. I think that's really good place to start. Jaime Lee 24:29 Part of the interest in transaction, first came out of that descriptive paper where we were trying to come up with systems to capture what was going on. So we were counting words that the participants texted and coding whether they were initiated or are they texts that are simple responses. We counted things they were doing, like did they use emojis or other multimedia? But we were missing this idea of how meaningful their text were and kind of what was happening in their texting exchanges. So this kind of combined with another measure we had, it was another measure in T-write really inspired by Pagie Beeson and Mira Fein's paper where they were using some texting scripts in their study. We also love scripting. We wanted to just have a simple measure, a simple brief texting script that we could go back and look at. We had as part of our protocol a three turn script. And I remember we sat around and said, what would be a really common thing to text about? And we decided to make a script about making dinner plans. And so we're collecting these simple scripts. And as I'm looking at these data coming in, I'm asking myself, what's happening here? How are we going to analyze what's happening? What was important didn't seem to be spelling or grammar. What seemed most important in this texting script was how meaningful the response was. And ultimately, would the person be able to make dinner plans and go plan a dinner date with a friend. So it seemed like we needed a measure of successful transaction within texting. Ellen Bernstein-Ellis 26:23 Jamie, I'm just going say that that reminded me of one of my very favorite papers, whereas you started out counting a lot of things that we can count, and it did give you information, like how much less people with aphasia are texting compared to people without aphasia, and I think that data is really essential. But there's a paper by Aura Kagan and colleagues about counting what counts, right, not just what we can count. And we'll put that citation and all the citations in the show notes-- you're bringing up some wonderful literature. So I think you decided to make sure that you're counting what counts, right? In addition to what we can count. Jaime Lee 26:59 Yes. And I do love counting. I was trained at the University of Oregon in single case experimental design. So really, behavioral observation and counting. So I am a person who likes to count but that sounds, like counting what counts. I love that. Ellen Bernstein-Ellis 27:13 Yeah, absolutely. In that 2021 paper, you look at the way some researchers have approached conversational analysis measures and you acknowledge Ramsberger and Rende's 2002 work that uses sitcom retells in the partner context. And you look at the scale that Leaman and Edmonds developed to measure conversation. And again, I can refer listeners to Marion Leaman's podcast as a 2021 Tavistock distinguished scholar that discusses her work on capturing conversation treatment outcomes, but you particularly referred to Aura Kagan and colleagues' Measurement of Participation in Conversation, the MPC. We'll put the citation in the show notes with all the others, but could you describe how it influenced your work? Jaime Lee 27:58 Yeah, sure. That's funny that you just brought up a paper by Aura Kagan, because I think I'll just first say how much Aura's work on Supported Conversation for Adults with Aphasia, SCA, how influential it's been throughout my career. First as a clinician and actually interacting with people with aphasia, and then later in facilitating conversation groups and helping to train other staff on the rehab team, the nursing staff. And now, it's actually a part of my coursework that I have students take the Aphasia Institute's free eLearning module, the introduction to SCA, as part of my graduate course, and aphasia, and all of the new students coming into my lab, do that module. So they're exposed really early on to SCA. Ellen Bernstein-Ellis 28:50 I'm just gonna say me too. We also use that as a training tool at the Aphasia Treatment Program, It's really been a cornerstone of how we help students start to learn how to be a skilled communication partner. So I'm glad you brought that up. Jaime Lee 29:03 Absolutely. So yes, Kagan's Measurement of Participation in Conversation (MPC), was really influential in developing our texting transactional success rating scale. And this is a measure that they created to evaluate participation and conversation. And they were looking actually both at transaction and interaction, I needed to start simply and just look at transaction first. They considered various factors. They have a person with aphasia and a partner engage in a five minute conversation. And they looked at factors like how accurately the person with aphasia was responding, whether or not they could indicate yes/no reliably, and could they repair misunderstandings or miscommunications. And then the raters made judgments on how transactional was that conversation? So, we looked at that measure and modeled our anchors for texting transactional success after their anchors. We had a different Likert scale, but we basically took this range from no successful transaction, partial transaction, to fully successful. And that was really modeled after their MPC. Ellen Bernstein-Ellis 30:17 Wow. Thank you for describing all of that. Jaime Lee 30:20 Yeah. Another big takeaway I'll add is that, and this really resonated with what we were hoping to capture, the scores on the MPC weren't necessarily related to traditional levels of severity. So Kagan and colleagues write that someone even with very severe aphasia, could score at the top of the range on the MPC. And I think similarly, what we feel about texting is even someone with severe writing impairments could be very successful, communicating via text message, really, depending on the tools they used, and perhaps, depending on the support they received from their texting partner. Ellen Bernstein-Ellis 31:02 You and your colleagues develop this Texting Transaction Success tool, the TTS, right? What is the goal of this measure? Jaime Lee 31:13 The goal of the TTS is to measure communicative success via texting. We wanted this functional measure of texting, not limited to accuracy, not looking specifically at spelling, or syntax, or morphology, but something that reflected the person with aphasia-- his ability to exchange meaningful information. I think the measure is really grounded in the idea that people with aphasia are competent and able to understand and convey meaningful information even despite any errors or incorrect output. So this is really relevant to texting because lots of us are using texting without correct spelling or without any punctuation or grammar. Yet lots and lots of people are texting and conveying information and feeling that benefit of connecting and exchanging information. Ellen Bernstein-Ellis 32:08 It sounds like a really helpful tool that you're developing. Could you please explain how it's used and how it's scored? Jaime Lee 32:16 Sure. So the TTS is a three-point rating scale that ranges from zero, which would be no successful transaction, no meaningful information exchanged, one, which is partial transaction, to two, which is successful transaction. And we apply the rating scale to responses from an individual with aphasia on the short texting script that I was talking about earlier. So this is a three-turn script that is delivered to a person with aphasia where the first line there, we ask them to use their mobile phone or give them a device, and the prompt is: “What are you doing this weekend?” We tell the person to respond any way they want, without any further cues. And then the script goes on, we deliver another prompt, “What about dinner?” And then another prompt, “Great, when should we go?” Each of those responses, we score on the TTS rating scale. We give either a zero, a one or a two. We have lots of examples in the paper of scores that should elicit a zero, a one or a two.We feel like it should be pretty easy for readers to use. Ellen Bernstein-Ellis 33:33 Wow, that's going to be really important. I always appreciate when I can see examples of how to do things. Jaime Lee 33:40 We did some really initial interrater reliability on it. The tools are pretty easy to score. We're able to recognize when something is fully transactional, even if it has a spelling error or lexical error, we can understand what they're saying. And a zero is pretty easy to score, if there are graphemes letters that don't convey any meaning, there's no transaction. Where things are a little more interesting, are the partial transaction. I think about an example to “What about dinner” and the participant responded, “Subway, Mexico.” So that's a one because the conversation, the texting partner, would really need to come back and clarify like, “Do you want to get a Subway sandwich?” Or “Do you want to go eat Mexican?” It could still be really transactional, and they could resolve that breakdown, but the partner would have a little bit more of a role in clarifying the information. Ellen Bernstein-Ellis 34:36 When you were actually trying to validate the TTS and establish its interrater reliability in your 2021 article with Cherney you mentioned using the Technology Confidence Survey from the 2021 Kinsey et al. article. Having tools that allow us to understand our clients' technology user profile is really informative in terms of understanding what modes of communication might be important to them. We talked earlier about not assuming, right, not assuming what people want to do or have done. Can you describe the survey? And is it available? Jaime Lee 35:13 Sure, yes. This is a survey we developed for the T-write study, the ORLA Plus Electronic Writing study. It's a simple aphasia friendly survey with yes/no questions and pictures that you can ask participants or clients about their technology usage. from “Are you using a computer? Yes or No” or “Are using a tablet?”, “Are you using a smartphone?” We ask what kinds of technology they're using and then what are they using it for? Are they doing email? Are they texting? Are they looking up information? Are they taking photos? It also has some prompts to ask specifically about some of the technology features like “You're texting? Are you using voice to text?” or “Are you using text to speech to help you with reading comprehension of your text?” At the very end, we added some confidence questions. We modeled this after Leora Cherney and Ed Babbitt's Communication Confidence Rating scale. So we added some questions like, “I am confident in my ability to use my smartphone” or “I am confident in my ability to text” and participants can read that on a rating scale. We use this in the context of the research study to have some background information on our participants. I think it could be a really great tool for starting a conversation about technology usage and goals, with people who are interested in using more technology, or are using it in different ways. This (survey) is in the Kinsey et al. article. It's a supplement that you can download. It's just a really good conversation starter, that when I was giving the technology survey to participants, many times they would take out their phone or take out their iPad and say, “No, I do it. I use it just like this”. It was really hands on and we got to learn about how they're using technology. And I definitely learned some new things that are available. Ellen Bernstein-Ellis 37:20 I think many of us use kind of informal technology surveys. I'm really excited to see the very thoughtful process you went through to develop and frame that (technology use). That's wonderful to share. Jamie, can you speak to the role of the TTS in terms of developing and implementing intervention approaches for texting? You just mentioned goals a moment ago? Jaime Lee 37:42 Sure. I think we have some more work to do in terms of validating the TTS and that's a goal moving forward. But it's a great starting place. If you have a client who wants to work on texting, it only takes a few minutes to give the script and then score their responses and gives us a snapshot of how effectively they're able to communicate through text. But in terms of developing intervention, to support texting, that's really where we're headed with this. I mean, the big drive is to not just study how people are texting, but really to help support them and texting more effectively and using texting to connect socially and improve their quality of life. But with any kind of intervention, we need a really good outcome measure to capture potential changes. Another reason I'm motivated to continue to work on the TTS, if people with aphasia are going to benefit from a treatment, we need rigorous tools to capture that change and document that potential change. 38:50 Ellen Bernstein-Ellis Absolutely. Absolutely. Jaime Lee 38:53 At the same time, I'd say the TTS isn't the only method we are focused on, we're really interested in understanding what unfolds during texting interactions. What's happening in these interactions. So, most recently, I've been working with my amazing collaborator, Jamie Azios, who is an expert in Conversation Analysis. I've been working with Jamie to say, “Hey, what's happening here? Can we use CA to explore what's going on?” Ellen Bernstein-Ellis 39:25 Well, Jamie, you probably heard this before, but Conversation Analysis can sometimes feel daunting for clinicians to use within their daily treatment settings. In fact, we've had several podcasts that have addressed this and have asked this question. What are you finding? Jaime Lee 39:40 I can definitely relate because I am still very new to CA and learning all the terminology. But Jamie and Laura and I are actually working on paper right now, a CAC special issue, because we presented some data at the Clinical Aphasiology Conference and then will have this paper. We'll be submitting to a JSHL on how we're applying CA to texting interactions. That goal is really based around understanding how people with aphasia and their partners are communicating via texting and looking at these naturalistic conversations to see what barriers they're coming across, and what strategies they are using to communicate in this modality. Ellen Bernstein-Ellis 40:27 That makes a lot of sense. And it really circles back again to communication partner training. That does not surprise me. Jaime Lee 40:33 We're seeing some really interesting, creative, and strategic behaviors used both by people with aphasia and their partners. We're seeing people link to a website, or instead of writing out the name of a restaurant, you know, “meet me here” with a link, or using an emoji to help convey their stance when they can't meet up with a friend. They might have more of an agrammatic production. But that emoji helps show the emotion and we're seeing a lot of people with more severe aphasia using photographs really strategically. Ellen Bernstein-Ellis 41:09 So those are the strategies are helping and I'm sure that CA also looks at some of the barriers or breakdowns, right? Jaime Lee 41:15 Yes, we're seeing some breakdowns, trouble sources in the CA lingo. In some instances, we see the partner clarify, send a question mark, like, “I don't know what you're saying”. And that allows the person with aphasia, a chance to self-repair, like, “Oops, here, this is what I meant.” And that's really useful. We also have seen some examples of breakdowns that may not get repaired. And we don't know exactly what was happening. In those instances, I suspect there were some cases where maybe the partner picked up the phone and called the person with aphasia, or they had a conversation to work out the breakdown. But we really don't know because we're using these data that were previously collected. So a lot of this does seem to be pointing towards training the partners to provide supports, and also helping people with aphasia be more aware of some of the nonlinguistic tools, and some of the shortcuts that are available, but there's still a lot to learn. Ellen Bernstein-Ellis 42:22 Well, Jamie, as you continue to explore this work, I know you're involved in a special project that you do with your senior undergrads at your university program at James Madison. Do you want to describe the student text buddy program? It sounds really engaging. Jaime Lee 42:38 Sure. This is a program I started here at JMU. JMU has a really big focus on engaging undergrads and research experiences. And we have students who are always asking for opportunities to engage with people with aphasia. Particularly during COVID, there weren't these opportunities. It just wasn't safe. But I know some of the participants from the T-write study and some people with aphasia in our community here in Harrisonburg, were looking for ways to be involved and continue to maybe practice their texting in a non-threatening situation. So this was a project and I was actually inspired by one of the students in my lab, Lindsay LeTellier. She's getting her master's degree now at the University of New Hampshire. But Lindsay had listened to an interview with one of our participants where she said she wanted a pen pal. And Lindsay said, “Oh, this participant says she wants a pen pal, I'd love to volunteer, I'll be her pen pal.” And I said, “Lindsay, that's great. I love the idea of a pen, pal. But if we're going to do it, let's make it a research project. And let's open it up and go bigger with this.” So Lindsey helped spearhead this program where we paired students with people with aphasia to have a texting pen pal relationship for four weeks. And in order to be able to kind of watch their texts unfold, we gave them a Google Voice number, so that we can watch the texts. We've really seen some really interesting things. We've only run about 10 pairs, but all of the feedback has been really positive from the people with aphasia, they felt like it was a good experience. And the students said it was a tremendous learning experience. We're seeing some interesting things. Using CA, Jamie and I presented this at IARC, sharing what the students/person with aphasia pairs are doing that's resulting in some really natural topic developments and really natural relationship development. Ellen Bernstein-Ellis 44:39 Nice! What a great experience, and we'll look forward to hearing more about that. Jamie, I can't believe how this episode has flown by. But I'm going to ask you a last question. What are you excited about in terms of your next steps for studying texting? Jaime Lee 44:57 I think we definitely want to continue the Text Buddy project because it's such a great learning experience for students, so we'll be continuing to do that. Jamie and I have applied for funding to continue to study texting interactions and use mixed methods, which is a pairing of both of our areas of expertise. I think there's just more to learn, and we're excited to eventually be able to identify some texting supports to help people with aphasia use texting to connect and be more effective in their communication. Ellen Bernstein-Ellis 45:35 Well, Jamie, this work is going to be really impactful on the daily lives and the daily ability for people with aphasia to have another mode of support for communicating. So thank you for this exciting work. And congratulations again on your Tavistock award, and I just am grateful that you are our guest for this podcast today. Thank you. Jaime Lee 45:58 Thank you so much, Ellen. This has been great, thanks. Ellen Bernstein-Ellis 46:01 It's been it's been a pleasure and an honor. So for our listeners, for more information on Aphasia Access and to access our growing body of materials, go to www.aphasiaaccess.org. And if you have an idea for a future podcast series topic, just email us at info@aphasia access.org. And thanks again for your ongoing support of aphasia access. References and Resources Babbitt, E. M., Heinemann, A. W., Semik, P., & Cherney, L. R. (2011). Psychometric properties of the communication confidence rating scale for aphasia (CCRSA): Phase 2. Aphasiology, 25(6-7), 727-735. Babbitt, E. M., & Cherney, L. R. (2010). Communication confidence in persons with aphasia. Topics in Stroke Rehabilitation, 17(3), 214-223. Bernstein-Ellis, E. (Host). (2021, July 29). Promoting Conversation and Positive Communication Culture: In conversation with Marion Leaman (No. 73) [Audio podcast episode] In Aphasia Access Aphasia Conversations. Resonate. https://aphasiaaccess.libsyn.com/episode-73-conversation-and-promoting-positive-communication-culture-in-conversation-with-marion-leaman Brown, G., & Yule, G. (1983). Discourse analysis. Cambridge. University Press. https://doi.org/10.1017/CBO9780511805226 Fein, M., Bayley, C., Rising, K., & Beeson, P. M. (2020). A structured approach to train text messaging in an individual with aphasia. Aphasiology, 34(1), 102-118. Kagan, A., Simmons‐Mackie, N., Rowland, A., Huijbregts, M., Shumway, E., McEwen, S., ... & Sharp, S. (2008). Counting what counts: A framework for capturing real‐life outcomes of aphasia intervention. Aphasiology, 22(3), 258-280. Kagan, A., Winckel, J., Black, S., Felson Duchan, J., Simmons-Mackie, N., & Square, P. (2004). A set of observational measures for rating support and participation in conversation between adults with aphasia and their conversation partners. Topics in Stroke Rehabilitation, 11(1), 67-83. Kinsey, L. E., Lee, J. B., Larkin, E. M., & Cherney, L. R. (2022). Texting behaviors of individuals with chronic aphasia: A descriptive study. American Journal of Speech-Language Pathology, 31(1), 99-112. Leaman, M. C., & Edmonds, L. A. (2021). Assessing language in unstructured conversation in people with aphasia: Methods, psychometric integrity, normative data, and comparison to a structured narrative task. Journal of Speech, Language, and Hearing Research, 64(11), 4344-4365. Lee, J. B., & Cherney, L. R. (2022). Transactional Success in the Texting of Individuals With Aphasia. American Journal of Speech-Language Pathology, 1-18. Meredith, J. (2019). Conversation analysis and online interaction. Research on Language and Social Interaction, 52(3), 241-256. Ramsberger, G., & Rende, B. (2002). Measuring transactional success in the conversation of people with aphasia. Aphasiology, 16(3), 337–353. https://doi.org/10.1080/02687040143000636 Todis, B., Sohlberg, M. M., Hood, D., & Fickas, S. (2005). Making electronic mail accessible: Perspectives of people with acquired cognitive impairments, caregivers and professionals. Brain Injury, 19(6), 389-401. Link to Jaime Lee's University Profile: https://csd.jmu.edu/people/lee.html mu.edu/people/lee.html
Cancer remains the leading cause of job-related illness and death among active firefighters. Now, a worldwide scientific panel -- the International Agency for Research on Cancer -- has said it more plainly than ever -- being a firefighter can cause cancer. On this edition of CPF Fire Wire, CPF President Brian Rice discusses the IARC finding and what it means for firefighters who've been denied presumptive Workers' Comp support. Guests: Dr. Jeffrey Burgess, noted firefighter cancer researcher and invited contributor to the IARC working group. Bryan Frieders, President, Firefighter Cancer Support Network
Dr. Jeff Burgess from the University of Arizona speaks with host Jim Burneka about the recent announcement from the World Health Organization on the occupation of firefighting and cancer. Dr. Burgess was one of 25 international experts that traveled to the International Agency for Research on Cancer (IARC) located in Lyons Paris this June to review the occupational classification of firefighting. On July 1, it was released that the occupational exposures obtained as a firefighter, has been upgraded to a Group 1 Carcinogen (carcinogenic to humans). More information on the recent IARC findings can be found here.
How did the meat industry, government, and cancer organizations respond to the confirmation that processed meat, like bacon, ham, hot dogs, and lunch meat, causes cancer?
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