Podcasts about patient advocate

·       In this podcast a patient with sarcoma and a specialist sarcoma nurse discuss the patient's journey from initial diagnosis through to treatment and recovery. They will also discuss the physiological, emotional and mental impact that sarcoma had, as well as the critical role of the cancer nurse specialist within the treatment plan, alongside a patient support group. Listeners to the podcast will gain a better understanding of the challenges in diagnosing soft-tissue sarcoma, the tools that are already available to assist physicians in diagnosis, and the importance of providing patients with clear information throughout the treatment journey.   This podcast is published open access in Oncology and Therapy and is fully citeable. You can access the original published podcast article through the  Oncology and Therapy website and by using this link: https://link.springer.com/article/10.1007/s40487-025-00342-6. All conflicts of interest can be found online. This podcast is intended for medical professionals.   Open Access This podcast is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The material in this podcast is included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc/4.0/.

Next Monday, the 20th of May is International Clinical Trials Day. To mark the day, Cancer Trials Ireland will host a public webinar on cancer trials (1pm-1.45pm). To find out more, Alan Morrissey was joined by Clare based Patient Advocate, Seamus Cotter and Cancer Trials Ireland, Vice Clinical Lead, Prof. Gerry Hanna. Photo(C): https://www.facebook.com/photo/?fbid=551146093890062&set=a.551146067223398

Hetlena Johnson is a Patient Advocate, Author, Community Organizer, Retired Educator and Lupus Warrior. She is devoted to helping others face the trials of life with an open mind and energy. A cheerleader for handling life's challenges with laughter and spirited resilience, she believes in living your best life while living with lupus.

HSE MidWest's Patient Advocate says he's shocked and concerned over the continued lack of access to cancer medicines here. A new report from the Irish Pharmaceutical Healthcare Association shows that just 25% of new cancer medicines are available in Ireland, the second-lowest rate in Europe. Of the 56 oncology medicines licensed by the European Medicines Agency since 2020, just 14 are available here. Lahinch-based Healthcare Campaigner John Wall who's living with Prostate Cancer and has been forced to travelled abroad for treatment has been telling Clare FM's Daragh Dolan that patient outcomes are suffering as a result.

In this MM+M Fast Break, Managing Editor Jack O'Brien talks with actress and MS patient advocate Selma Blair about her awareness work, what medical marketers need to know about working with celebrity ambassadors and how media is impacting the spread of health information. Check us out at: mmm-online.com Follow us: YouTube: @MMM-onlineTikTok: @MMMnewsInstagram: @MMMnewsonlineTwitter/X: @MMMnewsLinkedIn: MM+M To read more of the most timely, balanced and original reporting in medical marketing, subscribe here.

Amid the trees of County Clare, a living memorial has taken shape: The Forest That Won't Forget, which has been created in tribute to the women and families affected by the cervical check failures.Joining Kieran to discuss this memorial and why the 221+ group commissioned it is Lyn Fenton, Patient Advocate with 221+ Group and John Conway, Visual Artist and Co-Collaborator on the Forest that Won't Forget with Fiona Whelan.Image: 221+

As AI becomes a more integrated part of our daily lives, it is vital that we consider all stakeholder perspectives to enable us to better foster collaboration for effective AI integration in scientific publishing. In this episode we will explore AI's transformative impact on the creation and dissemination of scientific content, addressing the real-world challenges and diverse perspectives needed to harness its full potential. By considering the opportunities and barriers  (real and perceived) to AI adoption, we can distinguish how these challenges vary among stakeholders from a pharma, publisher, and patient advocate perspective. . Joining us for this conversation is Stephen Griffiths, Publications Head at GSK; Stephanie Preuss, Director of Content Innovation at Springer Nature; and Stephen Rowley, Patient Advocate and Director at Artension.To join ISMPP, visit our website at https://www.ismpp.org/ This episode is generously sponsored by Avalere Health.

This episode explores the evolution of a pediatric Patient Experience. Dive into core values, shared ownership, and practical strategies for building trust, driving change, and creating meaningful experiences for children, families, and staff.

Driven by her own daughter's diagnosis of 33 food allergies, Sherrina Gibson is passionate about food allergy inclusion. Founder and CEO of Carter Consulting, Sherrina brings a community-first, evidence-based approach to everything she does whether she's helping clinics tell their story through data or advancing food allergy awareness at the systems level. In this episode, Sherrina shares more about her impactful work and provides details on Feeding Allergy Awareness RVA, an upcoming event bringing together education and collaborative solutions for support in the food allergy community. Listen now and join us at the event in Richmond on May 15!Sherrina Gibson is the Founder and CEO of Carter Consulting, a nationwide firm that helps health organizations use data to drive equity and impact. Her passion is advancing food allergy inclusion in public health research, quality improvement, and within community organizations, inspired by her daughter's journey with multiple food allergies and asthma. Whether she's helping clinics tell their story through data or advancing food allergy awareness at the systems level, Sherrina brings a community-first, evidence-based approach to everything she does.To register for Feeding Allergy Awareness RVA (5/15/25) visit: https://www.wric.com/calendar/?_escaped_fragment_=/show?start=2023-10-25#!/details/feeding-community-health-rva-solutions-for-food-allergies/15433146/2025-05-15T09To learn more about Richmond Food Allergy Support visit: https://www.facebook.com/groups/375242322502115/?locale=zh_CN

Antibody-drug conjugates (ADCs) are novel therapeutic agents designed to target specific tumor markers with potent anticancer drugs. The Association of Cancer Care Centers (ACCC) is dedicated to providing up-to-date information on ADC treatment management. In this episode, CANCER BUZZ speaks with Nancy Mallett, a patient advocate, to discuss the patient's perspective and experience receiving treatment for gynecologic cancers, particularly with ADCs such as mirvetuximab soravtansine-gynx. “[Providers] giving me the information and allowing us to decide together, instead of just telling me, makes me feel more cared about and that I'm not just a number, I'm a person. They care about what I think, and look at my life and what it can do for me.” – Nancy Mallett   Nancy Mallett Patient Advocate   Resources:  FDA Approval Summary: Mirvetuximab soravtansine-gynx for FRα-positive, Platinum-Resistant Ovarian Cancer - https://bit.ly/4is00nD  Society of Gynecologic Oncology (SGO): Gynecologic Cancer Resources for Patients and Their Families - https://bit.ly/4jpYaoP  ASCO: Antibody-Drug Conjugates in Gynecologic Cancer - https://bit.ly/42GP5k8  Society of Gynecologic Oncology Journal Club: The ABCs of ADCs (Antibody drug Conjugates) - https://bit.ly/42U2962  Antibody-Drug Conjugates in Gynecologic Cancers - https://bit.ly/4cLYECZ    Funder Statement  This program is supported by AbbVie.   

In this special episode, host Melissa Berry is joined by Harjeet Kaur, a Stage 4 cancer survivor, patient advocate, speaker, influencer, and founder of Chai and Hope, a support community for South Asian cancer patients. Harjeet is dedicated to breaking the stigma around cancer, fertility loss, and hair loss due to treatment—especially within the South Asian community. After her cancer diagnosis and stem cell transplant, Harjeet turned her pain into purpose by breaking down barriers within her own family. While she received love and support, the topic of cancer was never discussed. Harjeet found a way to open up that conversation with her own family and now helps others do the same. We explore the emotional and familial challenges of fertility and hair loss—issues deeply significant in South Asian culture—and how Harjeet overcame these obstacles. She shares how founding Chai and Hope has created a supportive space for South Asian cancer patients. This conversation is about breaking stigma, overcoming family barriers, and finding strength through shared stories.  

00:00:00 - Surf's Up: Season 6 Episode 3Surfing the MASH Tsunami continues its coverage of the AASLD Emerging Trends Conference on MASLD, MetALD and ALD. This week, the panelists focus on what studies on bariatric surgery and drugs in development can tell us about future treatment and explore some clinical trial questions. Our newsmaker, HistoIndex Director of Clinical Development Yukti Choudhury, introduces us to FibroSIGHT, which provides clinicians with highly precise biopsy analysis. Finally, our expert, Global Liver Institute Vice President, Liver Programs Jeff McIntyre, discusses the implications of recent US government job cuts on future MASH treatment options and patient care.00:04:35 - IntroductionHost Roger Green briefly describes this episode's three sections and one key lesson from each.00:05:45 - Roundtable: Highlights from the AASLD Emerging Trends Conference, Part 3This portion of our Emerging Trends Conference Roundtable looks at how therapy might evolve over time. Aleksander Krag starts by discussing a presentation on what we can learn from bariatric surgery in terms of fibrosis reduction and why pharmacotherapies work (or not). He envisions a day where we have multiple treatment options and understanding how each works for specific types of patients, leading to robust, cost-effective, patient-specific treatment algorithms.  Alex Lalos describes how presentations on FGF-21s in advanced fibrosis and cirrhosis have whetted his appetite and Jenn Jones asks questions regarding ALD patient trial selection and assignment and clinical endpoints for cirrhosis trials. 00:16:55 - Newsmakers: FibroSIGHT Brings Clinical Trial Analytics to Clinical Practice Use of BiopsyYukti Choudhury, Director of Clinical Development at HistoIndex, joins Roger Green to discuss FibroSIGHT, a new HistoIndex service that allows clinicians to use HistoIndex's Second Harmonic Generation (SHG) technology to determine specific CRN fibrosis level for patients with inconclusive NIT results.  Yukti states that demand for this technique could equal 163,000 cases this year and rising to one million by 2028. She provides practical cues on ordering the test and its reimbursement. Roger shares his long-standing respect for SHG and the clarity it produces. He notes the economic benefit of determining whether a patient has F2 fibrosis, which is indicated for pharmacotherapy, vs.F1, which is not indicated. He sees clear benefit, but expresses concern that any option requiring more biopsies will reduce the number of patients treated.00:41:49 - Patient Advocate and Policy Expert Jeff McIntyre Discusses the Implications of FA/NIH Job Cuts on MASLD Patient CareGlobal Liver Institute Vice President, Liver Programs Jeff McIntyre joins Roger to discuss the April 1 job reductions at the FDA, explore implications for the entire MASLD community, and to ask what patients can and should do. Jeff and Roger note that the job changes will create significant uncertainty and probably reduce the government's ability to respond to future health crises. Jeff notes former FDA Commissioner Rob Califf's comment that the FDA as we know it "is dead," and that we have little idea what the future holds. According to Jeff, patients need to become even more vigilant self-advocates and also seek the guidance and support they need from patient advocacies. Finally, the conversation turns to discuss FibroSIGHT. Jeff describes FibroSIGHT as "exactly where we should be and should not be at the same time," a technology that takes a large step forward in understanding and patient support, but one that ties us to biopsy as a standard for clinical care. Jeff and Roger agree this issue will play out over the coming years. 01:09:18 - Business ReportRoger thanks listeners quoting a letter from one of them, and describes the next round of episodes. 

As the Director of Business Development at Cottonwood Tucson, Musomi McDowell brings over 25 years of experience in multi-level leadership. He started his career at Cottonwood Tucson in the year 2000 as a Mental Health Tech. He then became a Milieu Manager and was promoted to a Patient Advocate. The rest of his tenure has been in Marketing and Business Development. He possesses a distinctive ability to cultivate enduring professional relationships while forging strategic new partnerships. His deep understanding of ethical principles, combined with advanced sales expertise, enables him to effectively address the evolving needs of both clients and the industry. Musomi is widely recognized for his integrity and professionalism, earning a distinguished reputation both nationally and internationally. His sincerity, industry acumen, and comprehensive knowledge of clinical issues, treatment modalities, and levels of care make him a trusted resource for referents and treatment programs alike. His philosophy on client care is encapsulated in the following statement: "I am a passionate advocate for quality care, and Cottonwood Tucson exemplifies this commitment at every level. Through a client-centered treatment approach, Cottonwood Tucson provides a nurturing and secure environment where individuals can embark on a transformative healing journey, equipping them with the necessary tools to navigate life with resilience and clarity."

In this episode of Fertility Village Live, hosts Erin and Marissa sit down with a powerhouse panel of endo warriors for Endometriosis Awareness Month, to discuss the realities of living with endometriosis and how it impacts fertility. Joining the conversation are:

Dr. Hoffman continues his conversation with Dr. Julie Siemers, a nurse educator and author of “Surviving Your Hospital Stay: A Nurse Educator's Guide to Staying Safe and Living to Tell About It.” 

Dr. Julie Siemers, a nurse educator and author of “Surviving Your Hospital Stay: A Nurse Educator's Guide to Staying Safe and Living to Tell About It,” details the importance of patient safety in hospitals, the dangers of medical errors, and how patients and their families can advocate for better care. Dr. Siemers talks about the critical role of nurses, the hierarchy within the nursing profession, and the importance of effective communication between healthcare providers and patients. She also offers practical advice on dealing with high-risk medications, leveraging AI in healthcare, and ensuring better health outcomes by being informed and proactive.

While hair transplant services are well known, beard transplants are now on the rise too. But, how do they work, and should we be wary?Joining Seán to discuss is Spencer Stephenson, a Patient Advocate in the hair transplant industry…

While hair transplant services are well known, beard transplants are now on the rise too. But, how do they work, and should we be wary?Joining Seán to discuss is Spencer Stephenson, a Patient Advocate in the hair transplant industry…

Dr. Eithan Haim is the surgeon who blew the whistle on a Texas hospital's use of trans treatments on minors - and subsequently faced an intense, years-long criminal investigation from the Biden DOJ. Chloe Cole is a former trans kid and Patient Advocate for the nonprofit Do No Harm, which fights to protect minors from gender transition procedures.   They joined Rep. Crenshaw on March 12th for DeTrans Awareness Day and the reintroduction of Rep. Crenshaw's bill to ban federal funding for children's hospitals that perform gender transition procedures on minors. Dr. Haim tells the story of his persecution by the Biden DOJ and the medical malpractice being committed by some pro-trans doctors and hospitals. Chloe exposes the dark reality of how kids are manipulated by social media and unethical doctors into undergoing irreversible procedures. They also discuss the impact of President Trump's executive orders and the upcoming legal/legislative battles to protect minors from these harmful procedures.   Follow Chloe on X at @ChoooCole and Dr. Haim at @EithanHaim.

Feeling overwhelmed by a recent diagnosis? Lost in medical information? Struggling with the emotional ups and downs of cancer? Navigating this journey can be confusingand frightening. You can regain control, find strength, and confidently manage your cancer path! Please join us next week for an engaging discussion on Episode 496 of Marketing with Russ…aka #RussSelfieMarch 6, Thursday, 8am PacificFeaturing Talaya Dendy Meet Talaya, a Cancer Doula. As a Wellness Coach and Patient Advocate with Mental Health First Aid training, she offers compassionate support to those affected by cancer. Talaya also helps individuals build sustainable habits for long-termwell-being as a Calming Health and Wellness Coach. Connect with Talaya:LinkedIn:  linkedin.com/in/talayadendyWebsite: ontheotherside.lifeEmail:  talaya@ontheotherside.life Connect with Me:Website: https://www.russhedge.comEmail: Russ@russhedge.com #holistichealth #wellness #cancersupport #InspirationSpecialist #inspiration #Marketing

Dr. Lawren Honken is a wife, mom of 3, and a board certified Obstetrician-Gynecologist currently practicing in the Southeastern US. She is also a Certified Menopause Practitioner and is completing a fellowship in Integrative Health. She serves her patients as a trusted resource, providing medical education online while advocating for patient autonomy and informed consent. Her goal is to simplify difficult concepts in women's health and for those interacting with her online to feel they have a friend who is also an Ob/Gyn.She provides so much helpful information in today's episode on women's health and how to advocate for yourself in the healthcare industry. If you like today's episode, be sure to follow her on instagram, @yourfriendtheobgyn, and share the episode with someone who could learn from her!Thank you to HxH Podcast Sponsor, A Ranger Paints. Podcast listeners can get 10% off their purchase using code "HXH10"!Follow Haven on Instagram @healthbyhaven for more health and wellness content! 

I'm sharing four health trends I saw in 2024 that I'll be talking a lot more about now that I'm back from maternity leave plus some personal updates and announcements! Make sure we're connected https://getwellbe.com/subscribe/ and https://www.instagram.com/getwellbe/ 

Rhonda Nelson, renowned patient advocate, author, speaker and philanthropist is a beacon of resilience and strength. Her charitable work spans championing equitable access to affordable healthcare, supporting those diagnosed with AERD (Aspirin Exacerbated Respiratory Disease), serving as a voice in the foster care system and encouraging women to reinvent themselves in their different stages of life. Rhonda serves on the Executive Board of Directors with the Asthma & Allergy Network, impacts legislation and speaks nationally, raising awareness for AERD. Having dealt with AERD (Aspirin Exacerbated Respiratory Disease) herself for more than twenty years, she has experienced many misdiagnoses, a near fatal struggle to find relief, a desperate search for answers and a constant journey to access proper support. Rhonda and her husband Wayne, of the Little River Band (most popular during the 1970s and still touring) tirelessly devote their time and resources to helping others to navigate this challenging medical journey frequently associated with severe respiratory disease. Rhonda is a firm believer in empowering women to pursue the dreams they have for their lives, regardless of age, while finding strength in overcoming challenges. In her book, A Different Life, Rhonda not only pulls back the curtain on celebrity life, but also offers readers the chance to hear never-before-told stories, enjoy treasured family recipes and photos all while getting a taste of all things pertaining to life on the road. In this episode, Rhonda talks about her survival story, becoming your best self during your midlife years and being your best self while facing a chronic illness. She joins us from her home in Tennessee. Learn more and follow Rhonda: https://www.instagram.com/rhondabnelson/ https://rhondabnelson.com/ https://www.facebook.com/rhondabassnelson/

So many women today are coming to me in perimenopause…they have been to their doctor and told that their blood work is fine when they aren't feeling that way, they have been dismissed, offered birth control pills and anti depressants, they have been refused hormone testing, and HRT. This has left women suffering and feeling dismissed, gas lit even and hopeless.   In this exclusive expert interview with Dr. Jaime Hope, you will get real tips and strategies on how women can best advocate for their health with their health care practitioners in perimenopause and always.   Dr. Jaime Hope is a dual-board certified Attending Physician, Assistant Professor, Patient Advocate, keynote speaker, best-selling author, and passionate educator that helps people navigate the health care system to optimize their results   Tune In To Learn:   Why feeling dismissed by your doctor is not in your head Why you may get normal labs from your doctor but still not feel fine 4 simple steps to make sure you get the health care that you deserve   Learn more from Dr. Hope Here:   Website: www.drhopehealth.com Insta: https://www.instagram.com/dr.hopehealth/     SCHEDULE A FREE 30 MINUTE CONSULTATION TO DISCUSS YOUR HORMONE AND HEALTH NEEDS NOW  

Achieving work-life balance is essential for overall well-being, especially in healthcare. Join us as Robert Cote, a patient advocate for the VA, shares his personal journey through imbalance and the steps he took to restore stability. Discover the warning signs, practical strategies for self-care, and the importance of setting boundaries. Cote's powerful message reminds us: caring for yourself is the first step in being there for others.

Award-winning author, speaker, Gestalt Practitioner (a form of holistic, non-traditional coaching/guiding), and Patient Advocate, Risa August has been living with a pituitary tumor and rare disease for more than a decade. Risa shares her insights and perspectives on stage, offering words of inspiration to audiences. Additionally, Risa works one-on-one with clients, guiding them through the many roadblocks of life and toward living more fully inspired. Risa's book, The Road Unpaved: Border to Border with a Brain Tumor and a Bike, describes her soul-healing journey riding her bike from Canada to Mexico. She currently is working on the screenplay adaptation of the book. A girl with sparkles in her hair and once an Ironman athlete, Risa still has a passion for her bike and barbells. With her genuine curiosity and love for trying new (and old) things, you may find Risa taking Bollywood or Hip-Hop dance lessons, trying a silks aerialist or boxing class, going indoor skydiving, and guiding inspirational workshops in creativity. Through her personal transformation, following brain surgery and radiation, Risa has learned and practiced removing limiting beliefs, shifting her perspective, and embracing an expansive life…a life unleashed. Having survived brain surgery, Risa says: "I believe anything is possible. I believe in miracles. I believe we each hold the power to heal." Learn more: www.risaaugust.com www.instagram.com/risaunleashed/  www.facebook.com/risaunleashed www.facebook.com/featherandsagecoaching/  www.facebook.com/risa.august.unleashed/ www.linkedin.com/in/risa-august-9b130524a https://linktr.ee/risaaugust https://substack.com/@risaunleashed

Vasculitis is a rare condition that constricts blood vessels and can lead to loss of function or degeneration of certain parts of the body.In the case of Jayne Hardman, the disorder took her nose, but as she puts it, she now has several to choose from.Jayne Hardman is Patient Advocate for Vasculitis UK and joins Seán to discuss.

On this episode, we welcome Brianna Henderson, the founder and CEO of the nonprofit Let's Talk PPCM and a certified patient family partner, patient advocate, doula, and a bestselling author.On this episode, you will hear:- Brianna's journey: from misdiagnosis to advocacy- understanding postpartum cardiomyopathy- the impact of family history on health- navigating healthcare challenges- the birth of Let's Talk PPCM- survivor's guilt and advocacy- empowering moms with knowledge If you suspect you may be experiencing PPCM, you can request a BNP blood test from your obstetrician or your midwife.If you are experiencing these symptoms during pregnancy or postpartum, please talk with your doctor to make sure these are not early signs of PPCM:- rapid heartbeat palpitations- nagging cough- heavy chest pains- excessive swelling specifically of the legs and feet- excessive fatigue or tiredness during physical activities- shortness of breath- increased urinationResources:LetsTalkPPCM.orgYou can find Brianna and her Let's Talk PPCM community on Instagram:@letstalkppcm@letstalkppcm_ceoGuest Bio:Brianna Henderson is the Founder and CEO of the Lets TalkPPCM nonprofit organization, a Certified Patient-Family Partner, Patient Advocate, Doula, and Best Selling Author. She is also a loving wife and mother of two children. She was deeply inspired to provide comprehensive prenatal and preventative education after surviving a missed diagnosis during her pregnancy and postpartum season. After recovering from her pregnancy-induced health condition and learning what took her sister's life, Brianna dedicates her time to ensuring that mothers and families are informed during the perinatal year. She fulfills her hearts' mission through professional doula support andher non-profit organization.For more birth trauma content and a community full of love and support, head to my Instagram at @thebirthtrauma_mama.Learn more about the support and services I offer through The Birth Trauma Mama Therapy & Support Services.

An interim report on HIQA's review examining the case for a second emergency department in the Midwest is expected within the next three to four weeks. Public consultation opened last month on the independent statutory review for which the ultimate findings are due this summer. It comes as overcrowding has spiralled once again at University Hospital Limerick with 138 waiting for a bed at the facility this morning according to the Irish Nurses and Midwives Organisation. Lahinch-based Patient Advocate on HSE Midwest's Programme Improvement Board John Wall has been telling Clare FM's Seán Lyons he believes when it comes to the prospect of a second ED in this region, it's a question of when, not if.

In this episode, Dr. Paul Wheatley-Price sits down with Tim Monds, Founder of Give A Breath 5K and Patient Advocate living with Stage 4 Lung Cancer. They talk about how Tim's personal journey with lung cancer inspired him to start the Give A Breath 5K walk/run in 2019, which has raised over $500,000 to date for support and research initiatives for those living with lung cancer, and now including the inaugural Give A Breath Research Award. Two awards of $25,000 each are available in support of advancements for patients with advanced or metastatic (i.e., stage III or IV) lung cancer; specifically, initiatives that apply to those beyond first-line therapy. Applications are now open for the Give a Breath Research Award until January 31, 2025. For more details on how to apply, visit https://lungcancercanada.ca/about-us/research-program/give-a-breath-research-award/

AN OATH AND PLEDGE PODCAST RESHARE! John Page - Military2VA (M2VA) Transition Patient Advocate with the TN Valley Healthcare System/Dept. of Veterans Affairs joins veterans Josh Roe and John Ballinger in studio to talk about how the local VA can/does help veterans transition back into civilian life! Plus - mental health - why he joined the military - stories around deployment and bootcamp - how to connect with fellow veterans - and more! ALSO - a very honest and transparent story and ending to our podcast! This was a very good conversation and I think much needed - worth a listen and share! A podcast centered around our soldiers, veterans, and the civilians they protect! Through conversations, questions, and stories - we will address topics like healthcare, lessons learned, relationships, combat, the transition out of the military, and more! Our veterans take an oath - we say a pledge - what does that mean and why are they important?! === THANK YOU TO OUR SPONSORS: Vascular Institute of Chattanooga: https://www.vascularinstituteofchattanooga.com/ The Barn Nursery: https://www.barnnursery.com/ Optimize U Chattanooga: https://optimizeunow.com/chattanooga/ Guardian Investment Advisors: https://giaplantoday.com/ Alchemy Medspa and Wellness Center: http://www.alchemychattanooga.com/ Chattanooga Concrete: www.chattanoogaconcreteco.com Roofingco.com: www.roofingco.com ALL THINGS JEFF STYLES: www.thejeffstyles.com Please consider leaving us a review on Apple and giving us a share to your friends! This podcast is powered by ZenCast.fm

Host Dr. Davide Soldato and guests Dr. Suzanne George and Liz Salmi discuss their JCO article "Overcoming Systemic Barriers to Make Patient-Partnered Research a Reality" TRANSCRIPT TO COME Dr. Davide Soldato: Hello and welcome to JCO's After Hours, the podcast where we sit down with authors from some of the latest articles published in the Journal of Clinical Oncology. I am your host, Dr. Davide Soldato, Medical Oncologist at Ospedale San Martino in Genoa, Italy. Today, we are joined by JCO authors Liz Salmi, Researcher and Patient Advocate, and by Dr. Suzanne George, who works as a Medical Oncologist at the Dana-Farber Cancer Institute where she acts as the Chief of the Division of Sarcoma. She is also Associate Professor of Medicine at Harvard Medical School. Today, we are going to discuss with Suzanne and with Liz the article titled, “Overcoming Systemic Barriers to Make Patient-Partnered Research a Reality.” So thank you for speaking with us, Suzanne, Liz. Liz Salmi: Thanks for having us. Dr. Suzanne George: Yes, thanks. Dr. Davide Soldato: I just want to make a brief introduction because I think that the concept of patient partner research is very wide and I'm not sure that all of the readers of JCO really have a deep understanding because I imagine that there are a lot of ways we can involve patient and patient advocates in the research process. And so I was wondering if you could give us a little bit of an introduction about the concept. Dr. Suzanne George: Sure. I think the point that you raise is really important because there are many terms that are used, patient-partnered research, patient advocacy, but I don't think that there's a single definition as to what that actually means. In the context of our work, we've sort of summarized our experience through something called the PE-CGS or the Participant Engagement and Cancer Genome Sequencing network. And in that project, which is a Moonshot funded network, the intention is to have participants in research be true partners working with traditional academic research teams in order to develop networks specifically focused on cancer genomics. So what we've done, every center is a little bit different in the network, but we're really having research participants not just act, but really work on the research team from the beginning of the project inception all the way through the research project. Liz Salmi: What brings me to the PE-CGS network is my 17 years experience as a person living with a low grade glioma, brain tumor or brain cancer and involving patients in the co-design of research is super critical because patients bring unique lived experiences that can shape research questions, study designs and outcome measures in ways researchers might not anticipate. And we're finding this through our network. So through my work, including my patient experience and brain tumor focused study designs, I've seen firsthand that patient insights can drive more practical implementations that ultimately benefit both patients and the researchers. And so the particular project I work on in the network, we've got like five different arms and different groups of cancer types that are being represented, so I'm basically focusing on the OPTIMUM study around how brain tumor patients can help in this study design. So in this project I serve as not just a participant in the research, but also as a patient co-investigator. Dr. Davide Soldato: That is very interesting. And I think that we really captured the essence of patient-partnered research by having both of you here talking with us about the PE-CGS. And the second question that I wanted to ask is: I really think that the network focuses on something that is quite important right now and currently in medical oncology - so cancer genome sequencing, access to novel therapies - and I think that it's really challenging to imagine a way in which we can really get our patient and get patient advocates to help us designing new trials who are looking into this. And I just wanted to know, do you think that there is something that is particularly challenging when we are speaking specifically about cancer genomics and access to this type of drugs that are targeting specific molecular alteration? Because I think that in general it might be a little bit easier, maybe I'm biased on this, so you can also tell me if I'm wrong, but I think that it's a little bit easier when we are trying to design, for example, behavioral intervention or things that are more commonly found in oncology and a little bit more complicated when we are speaking about genomics. Dr. Suzanne George: So I think that's part of what this network is trying to address, which is really what are the barriers and the opportunities around cancer genomics from the patient perspective and how do we make sure that that perspective is included as we're thinking about study design and inclusion? As Liz mentioned, this network has five different networks within the network, five different centers, and each center is slightly different with the population that it engages with. And so there's diversity there in terms of reaching out to different patient communities and partner communities around potential barriers for genomics research. I think one of the things though that we're finding across the network is that people want to be part of this work. People that have a lived experience of cancer want to help move the field forward. And what we ended up writing about was some of the barriers that get in the way of that. It's awesome to have people like Liz that are like all in and then there's people who are on the other end of the spectrum that want to share their information to help move the field forward around genomics, but then there's all these barriers at the systems level that get in the way of that. So I think that that's one of the challenges we're trying to overcome and learn about across the network. Liz Salmi: Yeah, I think I bring this really interesting, I can't say I'm really interesting, but I think I bring this really niche perspective. Not only am I a person living with a brain tumor and I'm a co-investigator but also like a participant in this study. I also, in my day job, I'm an investigator as part of the director of communications and patient initiatives on the OpenNotes lab at Beth Israel Deaconess Medical Center. And our lab really focuses on how open, transparent communication between doctors and patients improves care. And that's been going on for longer than I've been around on our team. But what I bring to that lab is I focus on engaging both patients and clinicians in spreading the awareness about the power of how easy access and transparent communication, access to information across healthcare settings helps patients feel more involved and informed in their care.   And I work specifically, it's a really niche area. I work on projects that aim to expand access to notes and test results in diverse care settings, really helping tailoring initiatives so that various patient communities can understand how they can be involved in these types of research projects. Ultimately that's what brought me into this space. I might be one of the first generation of patients that actually starts helping co-design studies on things like this. And I think that across a lot of healthcare settings cancer is really what we're focused on. But patients are now increasingly being involved as research collaborators. And there's many different funding institutions such as the NCI but also PCORI they now mandate that funders reflect a shift towards more patient centered research frameworks. So it's like the PE-CGS network isn't the only group that's being funded to do research in this way. And I think other investigators, even outside of the cancer space, but specifically in cancer, need to learn how to do research in this way. Dr. Suzanne George: Yeah, I agree. And I think the other thing that we need to do is if people want to participate and that participation in many of these networks has to do with record sharing and data sharing, the system needs to accommodate that. If people want to share their information in order to allow research to be performed, then we need to make sure that that can happen, and that it's not that the institution systems don't connect with someone else's systems or that you to pay X, Y and Z dollars for the data to go A, B and C, or that some places are on this EHR and some places are on that EHR and so, sure, you can share it, but you have to go through all of these hurdles in order to make it happen. When a patient signs a consent form that says, “I want my data to be used,” we as an investigator community, we owe it to that patient to make sure that their information is being part of the data set that will be used for learnings. And that's part of what we wrote about, is the lots of behind the scenes things that just get in the way and that we need to work towards improving. Liz Salmi: Both Suzanne and I are really passionate about this stuff. And as a person living with a brain tumor for the last 17 years, I'm a chronic research participant. I always, always, am really curious. I'm like, “Yes, let me contribute my data. Whether that's electronic health record data or maybe I'm being interviewed about certain aspects of the cancer care experience.” And the one thing that bummed me out for like the first 10 years of being this chronic research participant is I would enroll in things, I'd be interviewed for things, I'd fill out these surveys and then I never heard anything about what happened with that information and that time I spent. And people would send me like a $10 gift card to Amazon, like, “Thanks for participating,” but really what I wanted to know is like, did you do anything with that? How did that inform things? So that really annoyed me to the point where I was like, I'm just going to be part of the research process and really figure out how we share that information back to everybody who had spent so much time. And so my participation in this space is like, “Let's change it. Let's give people information back.” And now I know it takes a really long time to have a finding that could be published somewhere that we then get it back. But closing the loop on the communications gap is something I'm really passionate about. Dr. Davide Soldato: Do you think that we are changing a little bit this perspective? I feel like we are getting a little bit better in creating patient communities of patients who are included in specific clinical trials. And then we do the effort of creating a community, of keeping people really involved with the research that they are participating in. I think that we are not quite there yet, but I think that we are making some kind of steps in that direction. For example, trying also to inform patients to participate in the study when the publication that is related to that specific study comes out. What is the benefit? What have we discovered? I think that we are not quite there yet. There is a lot of room for improvement, particularly in the way I think we communicate these to patients who participated in research. But I have the impression that we are making some steps forward. So I don't know. Do you share the same thoughts? Liz Salmi: So Dr. George talked about the PE-CGS network and then there's five different cancer types being studied. So the thing I can reflect on is what we've done in the, this is a really long acronym but, Optimizing Molecular Characterization of Low Grade Glioma. Say that 10 times fast. So our particular group is people who donate tissues about their brain tumors. We're really collecting data from people with multiple brain surgeries over time, which is really complicated and to make that process easier. And then once those tissue samples are stored somewhere, studying that information about what changes in the brain tumors over time and then also giving those results back to people so they can take that research level data and bring it back to their neuro oncology team and say, “Hey. Here's what I found out, “and having a conversation. So, this is a long multi touch point study and in order to do that, to even make that possible is the individual patients need to understand what's in it for them. They're donating precious tissue in order to make the research process work. And so in order to do that, it's not just the investigators saying, “Hey. Give us your brain tissue, peace out.” It is we have a whole research advisory council of people living with these particular tumor types who help us co-design how do we do that outreach, how do we explain why this is important, or how do we message the importance of this work so they understand,“Oh, this is what's in it for me and this is what's in it for other people like me.” And from there then with that process, which again I mentioned, all of these multi-step processes, once we're able to understand how patients want to hear that information, what's in it for them, then we bring it back to like those bench scientists, investigators going, “Okay. And here's how this workflow should work for the patients,” and design everything around the patient experience before we even care about what's happening from the scientist researcher perspective. Dr. Suzanne George: I agree. I think to your point, I think the fact that we're all here today talking about this is just like you said, is that we are making progress, right? Like we're even here having this conversation. Just like you said, I think there's opportunities to improve and further refine the communication and the involvement back in the patient community. When I think- if I put on my clinical investigator hat, I'm very involved in PE-CGS, but my primary research interest historically has been clinical trials and drug development. And I think that our approach in communicating results back has just not been consistent. But I do think that there's opportunities, just like you said, to provide summaries of information to loop back. I don't think that we've completely solved: What do we do? How do we provide information back to loved ones of patients that may no longer be alive that participated? How do we provide information to people who maybe we don't have their contact information? What if we lose track of them? How do we also make sure that we give people the choice to know? Do you want to know about this or would you rather just participate and then give space to that research? Because maybe that's how people's best for them. So I think that you're right, we're making progress, but I think that there's also a lot more that we can do. So I'm glad we're talking about it. Dr. Davide Soldato: How much do you think that directly involving patients in this process, like asking them directly and co-designing the trial from the very beginning and understanding the level of information? This might also be another question inside of the question. So first, how much co-designing this type of research helps, and then do we also need to further refine at that level of communication, different communication depending on the level of information that different people want to have? Because I think that that's another level of complexity that we need to work towards at a certain point. We need to work on that first level of giving back the information. But then I think that there is also the other point of providing the information and information that should also be probably adapted to the cultural belief of different patients, to the ethnicity or to whatever cultural background or social background or whatever they may place their most interest in. Dr. Suzanne George: So I think that you're 100% right on all of those points. I think those are all topics that need to be considered. We may be able to get to a certain degree of granularity around those communication points, but on the other hand, we also want to be able to communicate broadly and accessibly as possible. One of the interesting things about PE-CGS, as Liz was mentioning, is each of the five centers has a slightly different focus. For example, one of the centers is focused on American Indians and Tribal Nations, and the communication practices coming out of that center are really unique and really very special and something that's been really, I think for me, very fascinating to hear about. Because to your point, like, just the strategy and what's considered appropriate is just different. I think if we hope to build a research world where our research participants and research data come from a broad swath of the population that really represents the population, the only way that we're going to be able to do that is find ways that bring meaning across the population as well. And that may be different based on where people are coming from and where people are at in their own journeys and in their own lives. But it's on us to be open to that and like to hear that, so we can do the right thing. Dr. Davide Soldato: And I think that this is one of the objectives of the PE-CGS, really trying to bring this type of research participation to really diverse and underrepresented populations, not only in terms of cultural background, but I also think about different types of tumors. Like Liz was referring about brain cancer or low grade glioma, which is a very niche population. And I also think about sarcomas, for example, the degree of variability that we have in that specific type of disease is such that we really need to probably find different ways to communicate also inside of this diversity in terms of single patient and experiences, but also in terms of single diseases. You were speaking a little bit before about the fact that the manuscript is really on the barriers that we would need to identify and then to change to make this system a reality. We were talking a little bit about consenting information and consenting the sharing of information, and I think that you make a very interesting point about the consent process when we are designing research. Could you give a little bit of your impressions about giving informed consent? What we need to change, how can we improve? Dr. Suzanne George: The bottom line is the consent process needs to be simple, clear, and transparent. And sometimes I feel, because the traditional way that we've always gone about consent is frequently consent is as it should be in many ways. These consent forms are developed from a regulatory framework. What are we required to do to consent and how do we meet those requirements? Sometimes that becomes directly at odds with how do we do this simply, clearly and transparently? And I think as a research community, we have to be able to find a common ground there. That has to include regulatory requirements, that has to include IRBs. When we think about consents and work with our patient communities on this, everybody agrees the consents need to be more simple, except the IRB or maybe the IRB agrees, but it's this tension between how do we make it simple, clear and transparent and not get so bogged down in the regulatory that we lose that intent. Liz Salmi: It's complicated. As a person, I mentioned, I'm a chronic research participant living with a brain tumor for 17 years. I remember enrolling in studies and seeing things that are just so complicated. I'm like, “Well, I'm just going to sign off.” I imagine somewhere somebody who knew more than me said, “I should just fill out this thing.” And then as I switched to the research world, I spent more time digging into, “Wow, this is a really complicated consent,” versus, “This is a really streamlined consent and I love this.” And throughout my work with Dr. George and others on the PE-CGS network, an example of a good consent that's easy for people to understand is what the NIH All Of Us research project did, where they're trying to get a million people, more than that, signed up to be in this longitudinal study. And their consent is to go to their website and they have a whole bunch of short YouTube videos. There's a kind of like a quiz involved and they're animated, they have multiple languages involved. And I signed up for that study and I was like, “This is a beautiful consent.” And it's a very plain language. And more consents like that. If you're looking for a good example, go there. I have not been paid by them in any way. I'm a participant in their study. I'm not sure if you guys and your listeners are aware, but there was I think, October 19th of this year or 2024, there was a special communication published in JAMA on an update on the Helsinki Principles for Medical Research involving human participants. And what they're saying is an ethical update is patient engagement in research, which emphasizes the need for continuous, meaningful engagement with research participants and their communities throughout the research life cycle, before, during and after studies. And so this is what we're talking about here. And it's now been embedded in these updated principles. Dr. Suzanne George: That's really great and I agree with you. I think the All Of Us consent process is very accessible. It feels like you can understand it. But the other thing is that, again, I also am not directly involved with All Of Us, but the other thing about it is that they also have a high-touch way to consent where they have navigators and people that will go into communities in a very resource intensive way. So there's all different ways to go about it. We need to find a way that we can balance the complexity around regulatory and the simplicity and transparency that we need in cancer research. Dr. Davide Soldato: Do you think that in terms of patient engagement we are doing better in academic sponsored research compared to sponsored research? A little bit of a provocative question maybe. Dr. Suzanne George: I think that's a really interesting question. I think this idea of participant engagement and involvement is being infused across the research community. And in part, the FDA has prioritized it as well. I think the industry sees the FDA prioritizing this as well. And I think that there are many companies that are involving participant and advocacy communities in different ways in the study design, in the study process early on. So I think it's happening. Liz Salmi: I'll be spicy. I've been a participant, I've been an investigator, co-investigator on studies and I have been reached out to often by pharma of, “Hey Liz, brain tumor patient advocate, would you be kind of like the poster child of our study or be involved in that way?” And I personally want to have no work in that space. I have no interest. However, I am approached, and other people living with cancer have been approached, by industry about lending their likeness or being commercials. And I don't think there's enough education to patient advocates of what that necessarily means, pros and cons. But I also can't speak on behalf of all of the patient advocates who might want to see that's a way that they could lend their voice and advance research. I personally think that there needs to be more involvement from the academic side of creating spaces where patients can be involved in the co-design of research and they also get compensated for their time fairly at the same level or some version of it in a way so they don't just jump to the pharma side of things. But that's an opinion that I have. Opinions. Dr. Suzanne George: I think it's really interesting the point that you make about providing more awareness or information about what it even means to do these things from a patient side. I certainly don't know that side as well, but I do see, often, the term patient advocate used very frequently in many different contexts that mean many different things. And I think that there's an opportunity there for understanding more about what that really means and what it can mean. Liz Salmi: Yeah. We want to involve patients, we want to do patient engagement. The BMJ or the British Medical Journal, have this new policy in place for patients as reviewers of research. And what I find interesting with the BMJ is they also ask patients to declare their conflicts of interest. So this is kind of a new space. If you're involved in patient research or perhaps working with pharma, patients, if you're involved at that level, should also be declaring their conflicts of interest if they're getting paid by a pharma. Or do I have a conflict now that I'm doing this cool ASCO podcast? Maybe. But do we want to overburden patients with tracking all this information? So it's a new world. The more we have access to information, the more we share information, the more we can read studies and we co-design, there's a new space I think over the next 5 to 10 years where how do we define this in a transparent way. Dr. Suzanne George: Yeah, I think you're right. I know that we're getting long, but I just want to say one other thing about that, which is that you're right. If we're bringing patients in to be partners, then we have to treat each other that way. We have to acknowledge- I think this issue that you raise about compensation and about paying people for their time or acknowledging people for their time, I think that's really important and very under-discussed. Liz and I were at the annual meeting for the PE-CGS and someone was there giving a talk about- this was a guest speaker that was giving a talk about a very large high impact grant and that included a patient advocacy kind of module, let's say. And they put in a specific funding and budget for that component that included compensation for the people- from the people in the advocacy community that were spending their time. And the PI of this project, again, not to get into the details of it, but they were sharing that they got a fair bit of pushback on that. But the PI pushed back and said, “Listen, we're compensating other people for their time. These guys, we want them to be partners, we need to treat them as such.” And I think that also again, kind of we're in a new space, but if we're going to do it right, then we have to acknowledge that we're partners. Dr. Davide Soldato: But I think that maybe an experience like the PE-CGS probably can be also a network for expanding awareness for patient advocates and also for creating sort of a new culture about what does that mean and how can we also improve on that part. Because in the end, if we want to engage, we also need to provide patients with the instruments to engage in a way that we think it's both useful for them, that can make research better, but can also make them at the exact same level as everyone who is participating in that research, which I think it's the bottom line of all the concepts that we are discussing right now. Liz Salmi: Yep. Dr. Suzanne George: Yes, I agree. Dr. Davide Soldato: So I think we have covered a lot of things. Just wanted to make one last reference to a point that Suzanne mentioned earlier, which is the interoperability of systems. And I think that when we come to the cancer genome, that is very important, being able to share information, especially for those diverse and less common cancer types that we were discussing earlier. There is a lot of work in gaining all that information and we need to be able to gather all of that information in the same place to advance research. You were mentioning before that the process is actually very complicated and I was wondering if in the network you are already working on some potential ways to address this type of issue. Dr. Suzanne George: I think our first step is really just calling it out, acknowledging how hard this is and what the barriers are. Oftentimes I think in research, we don't talk enough about what our methodologic barriers are. We talk more about what our results are, but not like how hard it is. But like in our projects, the Count Me In project, my network that I'm involved with, we're doing rare tumors. We can only do the United States and Canada because of privacy issues. And we're doing a completely web based platform. So we have the technology. But the privacy laws are impeding our ability to involve other parts of the world. And even within the United States, it's not as easy as we would like to get records. For example, despite the fact that people are saying, “Yes, use my records.” But then it's like, “Okay. Well, that's not that easy. How are we going to get them?” We had to hire a third party vendor in order to get the records, in order to manage all the different consents and releases that were needed across all these different hospital systems. So I think the first question is just calling it out and then from there working together as a community to try to see what the solutions can be, because we need to come up with those solutions. Liz Salmi: Yeah, we're in the same camp as Dr. George and the fact that of the five partners, we're not associated with one particular institution. So we can reach out around the country and get access to those records. And we need them at multiple points in time, over time and it takes a lot of effort and work. And it's not like you could just, say, call hospital A and they have all the information. It's like all of the calls to all of the other sites. And it's not just from one surgery, it's from two or more surgeries. But also the way that people stay involved, and, by people, I mean patients and family members, there's this promise that at some point you're going to get some sort of information in response. Like, it's the “what's in it for me?” aspect of it. We do interviews with those who've been enrolled in the study, those who could be potential enrollees in the future because they've only had one surgery. And what we're learning overall is there's this altruistic nature that people have of- they want to participate in the research because they're like, “Here's my horrible cancer experience. I know other people are going to go through this as well.” There's this guiding light of “I want to do something, and I'm not going to be the person that creates the cure, discovers the genome or whatever for this particular cancer type. But my little bit of participation in this multiplied by 20, 30, 100, 1000 people, is what is going to lead us to the next phase in development and is going to move the needle for this particular tumor type or other cancer types.” And so what I think the impact in this space and participant engagement isn't just something we figure out, like a little research method and a little finding for one small tumor type, it's like the methods to do that is the big impact. The method around participant engagement can impact even beyond the cancer community. Dr. Davide Soldato: Yeah. As Suzanne was saying, we need to be in a system that really helps us and allows us to do that. So I think that you really have a lot of things to work on inside of the network. Dr. Suzanne George: I think one thing that I would say is I think that this issue of interoperability is acknowledged as a challenge. We refer to several different initiatives across the US where this is supposed to ideally change over time. I think people want it to change over time. I think investigators at the ERTC want it to change over time. I think different countries are working on this. And I think, again, the first step is getting us at the table talking about it, and then figuring out ways to move it forward. And I think it's there. I think that there is the will. We just have to figure out the how and continue to work on that together, because there's just a tremendous opportunity. I live in the rare tumor space, and between the FDA and the EMA and the regulatory, the national and the international research groups, the patient communities, people want this to be solved and I do hope that we will be able to get there. Dr. Davide Soldato: So I would like to thank Liz and Suzanne for joining us today. Dr. Suzanne George: Thanks for having us. Liz Salmi: Thank you. Dr. Davide Soldato: Suzanne, Liz, we appreciate you sharing more on your JCO article titled, “Overcoming Systemic Barriers to Make Patient-Partnered Research a Reality.” If you enjoy our show, please leave us a rating and a review and be sure to come back for another episode. You can find all ASCO shows at asco.org/podcasts.   The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.     DISCLOSURES Liz Salmi Speaking Honoria: Medscape. Research Funding (Inst): Abridge AI, Inc., Yosemite. Dr. Suzanne George Honoraria CStone Pharmaceuticals Consulting or Advisory Role Blueprint Medicines, deciphera, Bayer,  Lilly, UpToDate, Research to Practice, MORE Health, Daiichi, Kayothera, Immunicum, BioAtla   Research Funding Blueprint Medicines, Deciphera, Daiichi Sankyo RD Novare, Merck, Eisai, SpringWorks Therapeutics, TRACON Pharma, Theseus Pharmaceuticals, BioAtla, IDRx, NewBay Pharma, Acrivon Therapeutics   Patents, Royalties, Other Intellectual Property Company name: UptoDate Stock and Other Ownership Interests Abbott Laboratories and Pfizer Recipient: An Immediate Family Member

This episode of the DiepCJourney podcast is our final edition in 2024. I share a discussion across continents with two women leaders I admire who engage in patient advocacy and the patient story. Marie Ennis O'Connor is well known for “Journeying Beyond Breast Cancer” a platform where she gathers writers and bloggers sharing their stories across social media platforms. Her journey in patient advocacy began twenty years ago with a diagnosis of breast cancer. Marie poignantly tells us in the interview that, "We find when we are diagnosed with a serious illness, something is missing. We look around and see who can fix this. I discovered the person who could fix it was me." Sue Robins , whose patient experience started with a breast cancer diagnosis, has focused her healthcare advocacy based on her son, Erin's down syndrome. Like Marie, her healthcare advocacy began about twenty years ago. She is a Senior Partner and Patient Consultant at Bird Comm. I call them both my friends and they grace us with rich information in the realm of storytelling and patient engagement. We take a deep dive and share firsthand experiences, good and bad, about conference attendance, invitations to speak, and how important we feel it is to pass on the wisdom we have learned to the next generation of advocates. We are filled with nostalgic hope of meeting in person some day in Ireland, Marie's home country, on the Wild Atlantic Way, the western side of Ireland. It was my favorite area when I visited there in the fall of 2023 and was able to meet Marie in person in Dublin. Enjoy the final 2024 episode and I look forward to seeing you on the DiepCJourney podcast in 2025 with more exciting guests and topics!!  Connect with Marie across these platforms: LinkedIn: https://www.linkedin.com/in/marieennisoconnor/ Facebook: https://www.facebook.com/beyondbreastcancer Instagram: https://www.instagram.com/marie_ennis_oconnor/ Connect with Sue across these platforms: LinkedIn: https://www.linkedin.com/in/sue--6609147/ Facebook: https://www.facebook.com/sue.squawk.9 Instagram: https://www.instagram.com/suework/ Books: Birds Eye View and Ducks in a Row          

It's feared a new hospital in the Midwest could have "brand new wards with nobody to staff them" if accommodation and recruitment issues aren't addressed. It comes as a new CSO report has revealed that only 31% of individuals in Clare, Limerick and North Tipperary have a medical card while just 11% possess a GP visit card. The newly-published data also shows that at 8%, women aged 40 to 44 make up the largest proportion of people in the region. Lahinch-based Patient Advocate for the Programme Improvement Board of HSE Midwest, John Wall, says there's no point talking about building new facilities if there's nowhere for staff to live.

Amanda Lee was a passionate wedding photographer whose business was booming - that is, until, February 2020. Covid canceled her job and income, and to make matters worse, severe stomach pain was preventing her from eating (and pooping). When she finally got an appointment to see a doctor at the height of the pandemic, instead of offering scans or tests, he said it was "a blessing" that she hasn't eaten solid food in weeks, since she could stand to lose a few pounds. Distraught and in tears, she turned to TikTok to vent her frustration, then went to bed. She woke up to THOUSANDS of women in the comments, sharing similar stories dismissal and fat-shaming. They also urged her to get a colonoscopy ASAP. Turns out, a massive tumor was blocking her colon, and she immediately started treatment for Stage 3 cancer. Amanda's extraordinary story about our broken healthcare system and the power of women supporting each other on the Internet has garnered her a huge following on TikTok and Instagram, and media appearances on The Today Show and other outlets. She joins Matt to discuss how TikTok comments *literally* saved her life, fighting cancer with no income, her mom and friends who stood by her side, her innovative work with brands, and her new life's work as a patient advocate for women who need allies in the doctor's office. Follow Amanda: https://www.tiktok.com/@mandapaints https://www.instagram.com/mandapaints/ This show is made possible by listener support: https://www.patreon.com/influencepod Listen & subscribe wherever you get podcasts:

What is a Private Patient Advocate? Do you need one?Laura talks to Dr. Elena Borrelli who is a Doctor of Medical Science and a Board-Certified Patient Advocate who helps people and families with their health care journey.  She practices in Shelby Township, Michigan. Dr. Borelli manages their healthcare as she tries to help them live their healthiest life.  She focuses on people diagnosed with cancer and rare disorders. Dr. Borrelli  has worked in healthcare for over 25 years. Apart from her experiences in professional practice, she has encountered frustration and discrepancies while personally navigating the healthcare system. She has been the provider, the patient, the daughter, the sister, and the parent facing the overwhelming healthcare system; and left feeling alone and confused. Her passion is to help patients navigate the chaotic healthcare system. No one should have to do it alone. Getting a second opinion is often a good idea or enrolling in a clinical trial. Dr. Borelli research best management options for undiagnosed or chronic disease patients, as well related insurance/billing issues. Which we can all relate to!Dr. Borelli can also assist if you're admitted to a hospital or rehab facility, and she communicates with the healthcare team and helps reduce medical errors. How to get a hold of Dr. Borelli: advocate@pathwaypa.comTo hear her podcasts: https://pathwaypa.com/podcast/  Please like, subscribe, and comment on our podcasts!Please consider making a donation: https://thebonnellfoundation.org/donate/The Bonnell Foundation website:https://thebonnellfoundation.orgEmail us at: thebonnellfoundation@gmail.com Thanks to our sponsors:Vertex: https://www.vrtx.comViatris: https://www.viatris.com/en

Phantom Electric Ghost Podcast With Ray Hartjen: Writer, Musician & Cancer Patient Advocate Positive and Growth Mindsets Ray Hartjen is a writer and musician who lives in Mission Viejo, California. In a professional career that has spanned parts of five decades, Ray has pivoted on many occasions, from investment banking to pharmaceuticals, from consumer electronics to SaaS software. One constant throughout his career path, however, has been storytelling. In the past, Ray has been a frequent source for quotes from the national media on both the consumer electronics and retail industries. Additionally, as a contributor to a number of online outlets and platforms, including his rayhartjen.com site, he has spun his fair share of yarn on topics as far ranging as sports — primarily football, hockey and auto racing — and business, particularly revenue team functions like sales and marketing. Ray's previous work includes being the coauthor of Immaculate: How the Steelers Saved Pittsburgh (December 2022) and the author of Me, Myself & My Multiple Myeloma (May 2024), both published by Morgan James Publishing and available at all major booksellers. His third book, The Indy 500: A Year-Long Quest to Win the Greatest Spectacle in Racing, will drop at booksellers on May 6, 2025. Diagnosed with multiple myeloma in March of 2019, Ray is a cancer fighter every day of the week that ends in a ‘y.' And, with the soundtrack of life playing continuously in his head, Ray also performs and records with his two-piece acoustic band, the Chronic Padres.  A native of Texas, Ray holds an undergraduate degree from Eastern Kentucky University and an MBA from the University of Washington. Link: https://rayhartjen.com/ Donate to support PEG free artist interviews: PayPalMe link Any contribution is appreciated: https://www.paypal.com/paypalme/PhantomElectric?locale.x=en_US Support PEG by checking out our Sponsors: Download and use Newsly for free now from www.newsly.me or from the link in the description, and use promo code “GHOST” and receive a 1-month free premium subscription. The best tool for getting podcast guests:  Podmatch.com https://podmatch.com/signup/phantomelectricghost Subscribe to our Instagram for exclusive content: https://www.instagram.com/expansive_sound_experiments/ Donate to support PEG free artist interviews: Subscribe to our YouTube  https://youtube.com/@phantomelectricghost?si=rEyT56WQvDsAoRpr PEG uses StreamYard.com for our live podcasts https://streamyard.com/pal/c/6290085463457792 Get $10.00 Credit for using StreamYard.com when you sign up with our link RSS https://anchor.fm/s/3b31908/podcast/rss

Lori Abrams has been a consultant for the past year and a half, helping Organizations accomplish representation in their clinical trials. This has been achieved by developing patient and community focused Diversity Strategy Action Plans, incorporating the patient and caregiver's voice into decision-making, and bringing tangible solutions to the visible and invisible barriers that prevent representative recruitment and retention. Her last role was Vice President of patient advocacy and clinical research diversity at WCG. Abrams and her team worked to ensure that each clinical trial enrolled a diverse group of patients from underserved populations by facilitating culturally appropriate dialogue between patients, care providers, community members and trial stakeholders. The feedback and interactions from these groups garnered significant recommendations for the sponsors, but importantly, empowered diverse community members. The Team also worked with several pharmaceutical companies to develop Diverse Strategy Action Plans both for the Sponsor and the sites. As the Director of Advocacy, Diversity & Patient Engagement in Global Development Operations at Bristol-Myers Squibb (BMS) she has built a Team that developed innovative and unique advocacy approaches that brought BMS clinical trial awareness and accessibility to patients, physicians, and caregivers. The Team also developed many relationships with minority-focused health and community-based organizations, to increase diversity in BMS clinical trial populations. The Team also focused on educating the internal BMS workforce on the barriers, concerns and daily life of patients and caregivers. This was achieved through quarterly “Voice of the Patient” seminars, art shows by patients, patient videos and internal teleconferences where colleagues could ask the Team questions. Lori came to Bristol-Myers Squibb in 1998 as a Sr. Clinical Scientist in the Virology Group. During her first six years she was the Clinical Working Group Lead on both Videx EC and Reyataz. She joined the Drug Development Learning & Collaboration Team in 2003 managing a team of learning professionals. Prior to joining BMS, Lori was both a study coordinator in HIV/AIDS related clinical trials and a patient advocate at the National Institutes of Health and the Henry M. Jackson Foundation for Military Medicine. Lori partnered with many patient advocacy organizations to bring the plight of the military's HIV program to the public and integration into the HIV/AIDS overall arena. Additionally, she successfully lobbied Congress to gain support for the military's HIV Program and obtained an increase in funding of 20 million per year. Her work was recognized with a nomination by Congressman Steny Hoyer (House Majority Leader) to be a delegate to the White House Conference of HIV/AIDS, and an award on World AIDS Day by Congresswomen Constance Morella. Lori completed her undergraduate studies at the University of Maryland and received a Graduate Certificate in Organization Development from the NTL Institute for Applied Behavioral Sciences.

Grace Cordovano is an expert healthcare navigating solutionist and award winning, board-certified patient advocate, and Grace Vinton is an account director at Amendola, Patient Advocate, and the host of Like a Girl Media's Podcast "HITea With Grace”. In this discussion, recorded at Digital Health and AI Summit in Boston, they discussed AI use cases for improved patient experience in healthcare, how patients already use AI, and more.  Read the summary of the event in our newsletter: https://fodh.substack.com/p/ai-digital-health-pharma Key points:  AI can significantly reduce the administrative burden on patients, especially those managing chronic conditions, caregiving responsibilities, or complex medical records. Patients are using tools like ChatGPT to prepare for medical appointments by generating lists of questions and organizing medical records. AI can assist with translating complex medical information into more understandable language. Patient advocates emphasized the importance of involving patients in the design and implementation of AI in healthcare, ensuring tools cater to different types of patients (e.g., those with terminal illnesses, multiple comorbidities, etc.). It is critical for healthcare companies to involve diverse patient voices throughout the development of AI tools and offer fair compensation to prevent bias. The healthcare industry needs to improve digital literacy among patients, ensuring they understand how to use AI tools effectively and responsibly. Resources like the Patients Included Charter and organizations like the Light Collective and Savvy Coop were highlighted as valuable for patient education and advocacy. Advice for Patients on Using AI: 1. Start with Questions 2. Refine Prompts 3. Check for Errors 4. Be mindful of security and data privacy https://www.facesofdigitalhealth.com/

On today’s episode, I am speaking with Allison Rosen, a 12-year early-age onset colorectal cancer…

Eric Fisher is a Candian certified counsellor with over 13 years experience working in inpatient and outpatient treatment environments. Originally from the US, Eric specializes in helping those with addiction and trauma. He operates his private practice, Recovery Arts Counselling, in Calgary, AB.

In honor of National Family Health History Month in November, we have a special guest. We share the story of an incredible colorectal cancer survivor and health advocate, Marisa Peters, who was a Broadway vocalist and a very healthy, active mom to 3 young boys, yet diagnosed with stage 3 rectal cancer at only 39 years old. 

Based in Colorado, Risa August is an author, Speaker, Gestalt practitioner and Patient Advocate for rare pituitary diseases. She has been sharing her story for the past five years, and more recently in her memoir The Road Unpaved – Border to Border with a Brain Tumor and a Bike. In addition to speaking at conferences for leaders in pharmaceuticals, medical professionals, and patients, her work is published on blogs and in other smaller publications. Her most popular personal essay, “Marshmallow Clouds,” has been translated into Spanish. Through her personal transformation, Risa has learned and practiced removing limiting beliefs, shifting her perspective, and embracing a full life. Risa has a B.A. in geography, a certification in the Gestalt Coaching Method, and a certificate in mindfulness-based cognitive therapy. She has been living with a pituitary tumor and rare disease for over a decade and offering words of inspiration and information to audiences in hopes of saving others from heading down a bumpier road. A girl with sparkles in her hair and once an Ironman athlete, Risa still has a passion for her bike and barbells. With her genuine curiosity and love for trying new (and old) things, you may find Risa taking Bollywood or hip-hop dance lessons, trying a silks aerialist or boxing class, going indoor skydiving, or guiding an inspirational workshop in creativity.

There are over 7000 rare diseases identified in the U.S. alone. Many of these diseases affect children, leaving families desperate for answers. In this episode, we talk with one of those families and the biotech company offering them new hope. We also talk with an expert on policy that has jump-started R&D for rare diseases.Follow us on LinkedIn, X, Facebook and Instagram. Visit us at https://www.bio.org/

In this empowering episode, we sit down with Pam Kohl, Patient Advocate, to explore the critical role trusting your intuition when receiving health care. Pam shares her personal journey from an early breast cancer diagnosis to living with metastatic breast cancer, revealing her remarkable resilience and determination. Her story underscores the importance of trusting your instincts, advocating thorough testing, and staying informed to navigate the complexities of the healthcare system effectively.Find out how you are the best advocate for your health outcomes. Listen to the episode and discover:Navigating the Challenges of Breast CancerPam Cole's story is one of resilience and determination. After initially being diagnosed with stage 1 ER+ breast cancer in 2009, she underwent a lumpectomy, radiation, and five years of endocrine therapy. Despite being told she was cured, Pam faced a recurrence of her cancer, which eventually led to a metastatic diagnosis. The Power of Knowledge and Self-AdvocacyThroughout the episode, Pam emphasizes the necessity of understanding diagnostic tools and the need to demand comprehensive testing, such as PET scans, when necessary. Advancements in Breast Cancer Care and Nuclear Medicine SafetyThe conversation extends beyond personal experiences, touching on advancements in breast cancer management, particularly for ER+ cases. HER HEALTHX Improving Health Outcomes for WomenThe conversation explores the implications of medical gaslight and how HER HEALTHX, a nonprofit organization is dedicated to addressing the broader impact of medical gaslighting on women and their communities.3 Takeaways:Feel Empowered: When you understand your diagnosis and the available medical options is crucial for effective self-advocacy. Ask questions and don't be afraid to make choices that align with your instincts.Safety in Nuclear Medicine: The conversation sheds light on the importance of safety standards in medical testing and the advocacy needed to improve these practices. Support H.R.6815 — 118th Congress (2023-2024)Community Impact: Addressing how medical gaslighting affects not just the individual but the wider community."You need to be paying attention to your body and trusting your intuition. Trust yourself and advocate for yourself. It's the most important thing you can do."-Pam KohlThank you Pam for sharing your story. Join Pam Kohl and host Natalie Benamou on October 23rd for a panel discussion about Extravasation and Step Therapy at 11 AM CT/ 12 PM ET.Register hereResources:https://www.safernuclearmedicine.org/American Cancer SocietyHER HEALTHXAbout Pam KohlPam Kohl, a North Carolina native with over 40 years of experience in government and nonprofit management, has dedicated her career to breast cancer advocacy. As the former Executive Director of Susan G. Komen's North Carolina Triangle to the Coast Affiliate, she advocated for equitable breast cancer support and research across 29 counties. Pam directed the Komen Metastatic Breast Cancer Collaborative Research Initiative, focusing on finding treatments and cures, especially after her own battles with breast cancer. Diagnosed initially in 2009 with Stage 1 ER+ breast cancer and declared cancer-free in 2014, she faced a recurrence in 2016 and was diagnosed with Stage IV metastatic breast cancer in 2017. Her treatment regimen includes Verzenio, Fulvestrant, and regular scans.Connect with Host Natalie Benamou, Founder HerCsuite®Natalie Benamou is the host of "Women Leaders on the Move '' and the Founder of HerCsuite®, a powerful women's network providing connect circles for women's careers and businesses. She is dedicated to making it easier for women to achieve success in all aspects of their lives. Natalie is also the Founder and President of HER HEALTHX, a nonprofit on improving health outcomes for women.Natalie Benamou on LinkedInHerCsuite® on LinkedIn

In this episode of the podcast we speak to Ashley Point, a patient advocate advocate whose son Davis was diagnosed with Koolen de-Vries Syndrome (KdVS) in 2016. She also serves as the president for both the Koolen de-Vries Syndrome Foundation and My Kool Brother, two non-profits that help to support families living with KdVS through advocacy, research and fundraising. Connect with Ashley Point: Koolen de-Vries Syndrome Foundation - My Kool Brother - "Davis Out of the Unknown" Documentary - Donate Editor's Note: Chronic conditions and rare diseases don't discriminate. Patient Worthy and our partners are interested in amplifying the voices of those from all identities and backgrounds. If you have a story to share, learn more about how your voice can help spread awareness and inspire individuals from all walks of life here: getinvolved.patientworthy.com

John Page - Military2VA (M2VA) Transition Patient Advocate with the TN Valley Healthcare System/Dept. of Veterans Affairs joins veterans Josh Roe and John Ballinger in studio to talk about how the local VA can/does help veterans transition back into civilian life! Plus - mental health - why he joined the military - stories around deployment and bootcamp - how to connect with fellow veterans - and more! ALSO - a very honest and transparent story and ending to our podcast! This was a very good conversation and I think much needed - worth a listen and share! Listen to all our podcasts: www.oathandpledge.com A podcast centered around our soldiers, veterans, and the civilians they protect! Through conversations, questions, and stories - we will address topics like healthcare, lessons learned, relationships, combat, the transition out of the military, and more! Our veterans take an oath - we say a pledge - what does that mean and why are they important?! Please consider leaving us a review on Apple and giving us a share to your friends! This podcast is powered by ZenCast.fm

Today, those with kidney failure have multiple treatment options like dialysis and kidney transplants; however, many aren't aware of treatments like home hemodialysis. What is home hemodialysis, and who could benefit from it? Learn all that and more on today's episode. Jennie Wilson, MSN, RN has been working in Home Dialysis for over a decade and currently oversees several centers in the New York Metro Area that provide training and care to home dialysis patients. Her interest in population health and healthy equity has led to her passion for educating patients on their dialysis modality options. She has partnered with the National Kidney Foundation on various projects to share the clinical and lifestyle benefits of home dialysis. Bell Maddux was first diagnosed with MPGN when she was fifteen years old. She went through college, got married and started her career before she became eligible for transplant. She was fortunate to receive a living donation from her father without having to be on dialysis. Then, after 10 years with her father's kidney, Bell started in-center dialysis, and switched to home-hemodialysis in 2021. Bell is optimistically awaiting “the call” for a deceased donor, but in the meantime, she stays busy with her husband raising their two children, 7 and 12. She is a Peer Mentor and Patient Advocate with the National Kidney Foundation and has an 18-year career as a digital producer for a NY advertising agency.   Additional Resources: https://www.medicare.gov/care-compare/; https://homedialysis.org/; https://www.kidney.org/atoz/content/homehemo; https://www.kidney.org/peers; https://healthunlocked.com/nkf-dialysis#utm_source=nkf_webpage&utm_medium=w   Do you have comments, questions, or suggestions? Email us at NKFpodcast@kidney.org. Also, make sure to rate and review us wherever you listen to podcasts.

Valen is a passionate advocate for organ donation and polycystic kidney disease (PKD) with a zest for life and boundless gratitude for an extraordinary journey. She was diagnosed with PKD at the age of 10 which led to a challenging childhood full of hospital stays. On this episode we talk about her health journey and how she has now become a patient advocate and consultant to help the medical industry understand things from a patient's point of view. She also started a podcast "Unpacking the gift of life" where she and her co-host talk all things transplant and more! She discovered a love of public speaking and has shared her story at more than 100 events across North America. She's coordinated educational and fundraising events and helped raise over $1,300,000 for polycystic kidney disease research.  Valen Keefer: patient advocate, consultant, public speaker and writer.

Priscilla from Graith Care discusses the benefits of having an Independent Patient Advocate. Tonight at 10pm ET. Use Promo Code: DIAMOND or TRUMPWONDiamondandSilk.com1. https://DrStellaMD.com2. http://PatchThat.com3. https://www.KattsRemedies.com/shop/ ?aff=34. https://TWC.Health (Spike Protein Support)5. https://CardioMiracle.com6. https://MyPillow.com/TrumpWon7. https://TheDrArdisShow.com/shop-all/8. https://www.Curativabay.com/?aff=19. http://MaskDerma.com10. https://GiveSendGo.com Follow on https://ChatDit.comhttps://FrankSocial.com/u/DiamondandSilk LINDELL TV, CTATV, RSBN, GETTR, RUMBLESee omnystudio.com/listener for privacy information.