Podcasts about patient involvement

Operating rooms generate up to 30% of a hospital's waste–what can ENT do to change that? In this episode, Dr. Julie Strychowsky, a pediatric otolaryngologist at London Health Sciences Center in Ontario, discusses environmental sustainability in ENT. --- SYNPOSIS The discussion covers the inefficiencies and environmental impacts of current practices, such as the use of nitrous oxide, disposable equipment, and OR waste. Dr. Strychowsky shares insights on transitioning to more sustainable practices, including the use of reusable and multi-use equipment, standardizing procedures, and patient education initiatives like the ‘Bring Your Own Bag' campaign. The doctors highlight the importance of climate change, the carbon footprint of healthcare, and the role of policy and innovation in reducing environmental impact. Finally, they discuss resources for further learning and potential areas for research and development in sustainable healthcare practices. --- TIMESTAMPS 00:00 - Introduction 02:51 - Climate Change and Its Impact on Health 05:07 - Surgical Sustainability: Reducing OR Waste 08:27 - Clinic Waste and Efficiency Improvements 16:12 - Anesthesia Gases and Environmental Impact 23:06 - In-Office Procedures and Telemedicine in ENT 28:58 - Global Efforts & Patient Involvement in Sustainability 37:03 - Policy Changes and Education for Sustainability 39:59 - Future Research and Innovation in ENT 42:26 - Final Thoughts and Mentorship --- RESOURCES Dr. Julie Strychowsky https://www.schulich.uwo.ca/paediatricsurgery/people/faculty/Strychowsky,%20Julie.html Kidane J, Thiel CL, Wang K, Rosen CA, Gandhi S. A Comparison of Environmental Impacts Between Reusable and Disposable Flexible Laryngoscopes. Laryngoscope. 2024 Dec 26. doi: 10.1002/lary.31927. Epub ahead of print. PMID: 39723758. https://pubmed.ncbi.nlm.nih.gov/39723758/ Anderson J, Hu H. Environmental Sustainability: Waste Audit Comparison Operating Room and In-Office Laryngeal Surgery. Laryngoscope. 2024 Feb;134(2):803-806. doi: 10.1002/lary.31005. Epub 2023 Sep 2. PMID: 37658737. https://pubmed.ncbi.nlm.nih.gov/37658737/ Cascade OR playbook https://cascadescanada.ca/

Time Stamps[0:00 ] Thyroid Truths Navigating Hashimoto's with Naturopathic Insights from Dr. Carolyn Stone[3:46] Challenges in Thyroid Health Management:[7:16 - 9:30] Innovative Treatments and Research:[9:31] Importance of Patient Involvement and Continuous Learning:[24:00] Medication Challenges in Women with Hashimoto's[25:50] Proper Thyroid Testing and Interpretation[26:20] Carolyn Stone: Early Signs of Hashimoto's and Thorough Examination[26:40] What Happens After Hashimoto's Diagnosis?[28:05] Exercise, Circadian Rhythms, and Adrenal Health[29:50] Foundational Pieces for Hashimoto's Management (Gut Health, Hormone Balance, Adrenal Function)[30:20] Carolyn Stone: Estrogen Issues and Hormonal Imbalances[32:54] Holistic Approach to Treatment and System Interconnectedness[39:00] Elimination Diets for Hashimoto's[41:24] Using Elimination Diets to Understand Food Sensitivities[42:21] Personalized Treatment Plans and Adjustments[43:50] Patient-Centered Approach to Diet and Health[45:45] Peptides and GLP-1 Receptor Agonists[49:16] Peptides, Side Effects, and Concerns (e.g., Thyroid Cancer in Rat Studies)Dr Carolyn Stone Socialshttps://www.instagram.com/drstoneaz/https://drstone.mykajabi.com/email-signupFREE BOOK: https://drstone.mykajabi.com/hashimoto's-ygt-amazon-linkConsult: https://intakeq.com/booking/zgiug6?practitionerId=5cbd12202604ab0328a2784a

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Helen and Danni are using their experiences to help improve womb cancer research. Helen and Danni are both volunteers for the Peaches Womb Cancer Trust Patient Voices group. Sarah, Helen and Danni talk about How the group grew from one voice to Patient Voices The difference they have made to research especially around language and ethics Why contributing to research can help bring meaning and comfort following a cancer diagnosis What research teams could be doing to work more effectively with patients   Find out more Read the full show notes on the podcast website  Connect with Helen via LinkedIn or email Find out about Peaches Trust and Peaches Trust Patient Voices   Contribute to the 50th Episode by 30 July 2024 Leave a voice message via SpeakPipe   About Research Adjacent Follow the podcast on LinkedIn and Instagram Sign up to the podcast newsletter Email Sarah a comment, question or suggestion Leave Sarah a voice message   Theme music by Lemon Music Studios from Pixabay

Peter Boyd and Ingrid de Groot join Dr. Latika Gupta to explore the value of patient involvement in Rheumatology research. Reflecting on their lived experience, Peter and Ingrid discuss their proudest moments, and identify areas in the patient and physician partnership that they hope to improve in the future.Thanks for listening to Talking Rheumatology Research! Join the conversation on Twitter using #TalkingRheumResearch, tweet us @RheumJnl, or find us on Instagram. Want to read more rheumatology research? Explore Rheumatology and Rheumatology Advances in Practice.

In this episode of the Ketones and Coffee Podcast, host Lorenz welcomes Dr. Thomas Seyfried, a scientist renowned for his pioneering research into cancer and metabolic diseases. Dr. Seyfried, who holds a Ph.D. in Genetics and Biochemistry, discusses his controversial theory that cancer is not a genetic but a mitochondrial metabolic disease.Dr. Seyfried underscores the inconsistency he found in existing research and the potential of non-toxic therapies like calorie restriction and ketogenic diets to manage cancer. He provides compelling evidence and case studies, arguing for a paradigm shift in cancer treatment. This episode offers listeners an insightful exploration of alternative cancer therapies and the need for a broader acceptance within the medical community.00:00 Introduction and Guest Welcome00:14 Dr. Seyfried's Background and Research Focus02:52 Challenging the Genetic Theory of Cancer04:35 The Role of Mitochondria in Cancer15:14 Historical Context and Paradigm Shift22:42 Metabolic Dysfunction and Cancer Development29:12 Understanding Mitochondria and Chronic Diseases29:43 Targeting Cancer Metabolism30:04 The Role of DNA Mutations and ROS31:27 Strategic Glutamine Targeting31:53 Ketosis and Cancer Treatment33:21 Challenges in the Medical Community36:07 Hybrid Cancer Treatments37:31 Patient Involvement in Metabolic Therapy38:20 Success Stories and Documentary Efforts40:03 The Future of Cancer Treatment41:05 Addressing the Medical Community's Resistance43:23 The Need for Metabolic Therapy AwarenessSupport Dr. Seyfried!  https://www.cancer-as-a-metabolic-dis...You can support him in multiple ways:- Buy his summary book: https://www.amazon.com/dp/B0CLJQ13F2- Buy his scientific book: https://www.amazon.com/Cancer-Metabol...~~~~~~Estrella by Audiorezout is licensed under a Attribution-NonCommercial-ShareAlike 4.0 International License.~~~~~~ Save yourself that trip to the market — Instacart delivers groceries in as fast as 1 hour! They connect you with Personal Shoppers in your area to shop and deliver groceries from your favorite stores.Instacart - Groceries delivered in as little as 1 hour. Free delivery on your first order over $35. Go to ketocoachlorenz.com and use the contact form to get your Free Consultation!Support the Show.

In this episode of the Ketones and Coffee Podcast, host Lorenz welcomes Dr. Thomas Seyfried, a scientist renowned for his pioneering research into cancer and metabolic diseases. Dr. Seyfried, who holds a Ph.D. in Genetics and Biochemistry, discusses his controversial theory that cancer is not a genetic but a mitochondrial metabolic disease.Dr. Seyfried underscores the inconsistency he found in existing research and the potential of non-toxic therapies like calorie restriction and ketogenic diets to manage cancer. He provides compelling evidence and case studies, arguing for a paradigm shift in cancer treatment. This episode offers listeners an insightful exploration of alternative cancer therapies and the need for a broader acceptance within the medical community.00:00 Introduction and Guest Welcome00:14 Dr. Seyfried's Background and Research Focus02:52 Challenging the Genetic Theory of Cancer04:35 The Role of Mitochondria in Cancer15:14 Historical Context and Paradigm Shift22:42 Metabolic Dysfunction and Cancer Development29:12 Understanding Mitochondria and Chronic Diseases29:43 Targeting Cancer Metabolism30:04 The Role of DNA Mutations and ROS31:27 Strategic Glutamine Targeting31:53 Ketosis and Cancer Treatment33:21 Challenges in the Medical Community36:07 Hybrid Cancer Treatments37:31 Patient Involvement in Metabolic Therapy38:20 Success Stories and Documentary Efforts40:03 The Future of Cancer Treatment41:05 Addressing the Medical Community's Resistance43:23 The Need for Metabolic Therapy AwarenessSupport Dr. Seyfried!  https://www.cancer-as-a-metabolic-dis...You can support him in multiple ways:- Buy his summary book: https://www.amazon.com/dp/B0CLJQ13F2- Buy his scientific book: https://www.amazon.com/Cancer-Metabol...~~~~~~Estrella by Audiorezout is licensed under a Attribution-NonCommercial-ShareAlike 4.0 International License.~~~~~~ Save yourself that trip to the market — Instacart delivers groceries in as fast as 1 hour! They connect you with Personal Shoppers in your area to shop and deliver groceries from your favorite stores.Instacart - Groceries delivered in as little as 1 hour. Free delivery on your first order over $35. Go to ketocoachlorenz.com and use the contact form to get your Free Consultation!Support the Show.

Unsure about participating in clinical trials? Hear advice from one patient's experience and experts who have been involved on the provider side in Part 2 of this special #HFWeek2024 episode!

Unsure about participating in clinical trials? Hear advice from one patient's experience and experts who have been involved on the provider side in Part 2 of this special #HFWeek2024 episode!

In this episode of "My DPC Story Podcast," host Dr. Maryal Concepcion interviews Dr. Lauren Hedde, founder of Direct Doctors, an innovative direct primary care (DPC) practice based in East Greenwich, RI. Dr. Hedde's clinic model focuses on physician burnout, healthcare, and value-based care, offering a unique approach to patient-doctor relationships and healthcare delivery. She shares insights on her practice, emphasizing a slow and steady approach built on low overhead and patient involvement. The discussion delves into technology utilization, boundary setting, family integration, and the transition of her husband, also a physician, into the practice. Dr. Hedde's emphasis on a simplified style of DPC, known as "DPC light," along with her website burdenfreemd.com, serves as a valuable resource for addressing physician burnout and promoting financial independence for physicians. With a focus on creating sustainable payment models, efficient operations, and leveraging technology, Dr. Hedde's insights offer valuable takeaways for physicians seeking camaraderie and support, especially in the realm of direct primary care and value-based care. Dr. Maryal Concepcion and Dr. Lauren Hedde also discuss the potential for specialists to adopt a direct care model, the benefits of new technology in their practices, and the impact of direct primary care in rural settings. With its engaging insights and practical advice, this episode is a must-listen for healthcare professionals and individuals interested in direct primary care, physician burnout, and value-based care in the healthcare industry.HINT: Join The Thrive Community Today: HEREGet $10 off your order of $30 or more at Sticker Mule!Support the show*SPONSOR THE POD! Book a sponsor meeting to learn more HERE*Have a DPC question?!? LEAVE US A VOICEMAIL HERE!*Visit the DPC SWAG store HERE!*Let's get SOCIAL! Follow My DPC Story! FACEBOOK * INSTAGRAM * LinkedIn * TWITTER * TIKTOK * YouTube

"Nothing About Me Without Me": Sharon O'Toole is a senior research fellow in Trinity College Dublin working in the area of gynaecological cancer. She sits on the board of ISGO and co-founded a public and patient involvement group (ISGOPPI) within the society. Public and patient involvement known as PPI is where patients and members of the public get involved in research, working in partnership with healthcare professionals, scientists, allied health to improve the patient experience and to ultimately make an impact on patient outcomes. Patient advocate Bridget explains what motivates her to get involved in PPI projects, how she protects herself psychologically and emotionally whilst advocating for patients. 

The wider community of liver stakeholders witnessed an exciting July as new compelling data and presentations were revealed across two major meetings, EASL Congress and the American Diabetes Association Scientific Sessions. Throughout that month, SurfingNASH provided real-time coverage and review of the emerging stories spanning topics like drug development, new nomenclature, omics and AI, NITs and more. For this episode the trio of co-hosts, Jörn Schattenberg, Louise Campbell and Roger Green, embark on their first exclusive discussion together in a while without any guest panelists. The overarching theme of the program observes what has made 2023 interesting and exciting thus far before offering a look into what the audience can expect to learn more about in the imminent months.This conversation starts with continued focus around the new nomenclature, but moves on quickly from there to Louise's highlight of the year. She talks about how patients now play a larger role in all facets of education and drug development. Jörn agrees with this note and suggests that the level of patient involvement in this disease is far greater than what is observed elsewhere. Roger agrees with both statements, although expresses caveats about the need over time to move forward from simply including patient voices to actually listening to what they have to say and taking guidance from them with higher degree of success. From here, Roger introduces his highlight which is a combination of NIT development that will make these tests more pivotal on patient diagnosis management and, separately, new artificial intelligence modalities that utilize biopsy results to produce better pictures and a far more sophisticated level of disease understanding than we've had to date. Jörn and Louise both comment on issues they consider pivotal and highly valuable in terms of the use of NITs and lessons from AI.Reviewing this episode and the various conversations is a strong reminder of how much information has already become available this year and what it portends in terms of future episodes and an ever-increasing explosion of new information about liver disease, drugs, testing, and so much more. If you have questions or comments around the EASL Congress or ADA meetings, the discussed therapeutics, new nomenclature, or any other topic addressed in this episode, we kindly ask that you submit reviews wherever you download the discourse. Alternatively, you can write to us directly at questions@SurfingNASH.com.Stay Safe and Surf On!

In this episode, Martin Kiernan talks to Sinèad Horgan, Director of Nursing South/South West Hospital Group, and School of Nursing and Midwifery, College of Medicine and Health, University College Cork in Ireland. We discuss a journey towards surgical site sueveillance and quality improvement and her recent papers on this topic. We discuss knowledge, attitudes, gaining engagement, buy-in and the importance of patient involvement in SSI prevention. Papers discussed include: Horgan S, et al. Healthcare professionals' knowledge and attitudes of surgical site infection and surveillance: A narrative systematic review. Nurse Educ Pract. 2023;69:103637.  HTTPS://doi:10.1016/j.nepr.2023.103637 Horgan S, et al. Impact of a quality improvement intervention on the incidence of surgical site infection in patients undergoing colorectal surgery: Pre-test-post-test design. J Clin Nurs. 2023.  HTTPS://doi:10.1111/jocn.16690 Troughton R, et al. Understanding determinants of infection control practices in surgery: the role of shared ownership and team hierarchy. Antimicrob Resist Infect Control. 2019;8:116.  https://doi:10.1186/s13756-019-0565-8

In this episode, Martin Kiernan talks to Sinèad Horgan, Director of Nursing South/South West Hospital Group, and School of Nursing and Midwifery, College of Medicine and Health, University College Cork in Ireland. We discuss a journey towards surgical site sueveillance and quality improvement and her recent papers on this topic. We discuss knowledge, attitudes, gaining engagement, buy-in and the importance of patient involvement in SSI prevention. Papers discussed include: Horgan S, et al. Healthcare professionals' knowledge and attitudes of surgical site infection and surveillance: A narrative systematic review. Nurse Educ Pract. 2023;69:103637.  HTTPS://doi:10.1016/j.nepr.2023.103637 Horgan S, et al. Impact of a quality improvement intervention on the incidence of surgical site infection in patients undergoing colorectal surgery: Pre-test-post-test design. J Clin Nurs. 2023.  HTTPS://doi:10.1111/jocn.16690 Troughton R, et al. Understanding determinants of infection control practices in surgery: the role of shared ownership and team hierarchy. Antimicrob Resist Infect Control. 2019;8:116.  https://doi:10.1186/s13756-019-0565-8

In this plain language podcast, highlights from the European Society for Medical Oncology (ESMO) Congress are discussed for a second year in a row, from the perspective of both a patient advocate and a healthcare professional. Here, the authors discuss the importance of involving patients in the design of clinical trials, as well as strategies to improve dialogue and connections between clinicians, researchers and patients.  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/s40487-023-00231-w. All conflicts of interest can be found online.   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/.

Continuing our collaborative series with Ovarian Cancer Canada (OCC), we are pleased to welcome our next guest, Dr. Alicia Tone. In this episode, Dr. Tone shares the personal story of how her work with real women living with ovarian cancer continues to inspire and motivate her work. Dr. Tone elaborates on the critical role of patient involvement in advancing ovarian cancer research and how OCC ensures patient-centeredness in many areas of their work. She also outlines the resources available for scientists in the ovarian cancer field such as an extensive collaborative network of researchers, clinicians, trainees, and patients, funding opportunities, specimen bank and others. Bio: Dr. Alicia Tone is Scientific Advisor at Ovarian Cancer Canada. Dr. Tone has been in the ovarian cancer field for 20 years. Her history prior to joining Ovarian Cancer Canada includes a PhD at the University of Toronto in Ontario, post-doctorate training at BC Cancer, and 7 years as a Scientific Associate in the Division of Gynecologic Oncology at Princess Margaret Cancer Centre.   In 2020, Dr. Tone started her work with Ovarian Cancer Canada where she runs the national OvCAN research initiative and performs collaborative research to understand and improve care along the ovarian cancer continuum (prevention, diagnosis, treatment, supportive care).    Ovarian Cancer Canada (OCC) Website: https://ovariancanada.org/ OCC email: info@ovariancanada.org Follow OCC on social media: https://www.instagram.com/ovariancancercanada/  https://twitter.com/OvarianCanada https://www.facebook.com/OvarianCancerCanada/  https://www.youtube.com/user/OvarianCancerCanada https://www.linkedin.com/company/ovarian-cancer-canada/  _  For more information on the Gynecologic Cancer Initiative, please visit https://gynecancerinitiative.ca/ or email us at info@gynecancerinitiative.ca   Where to learn more about us:   Twitter – @GCI_Cluster  Instagram – @gynecancerinitiative  Facebook – facebook.com/gynecancerinitiative 

For the rare disease community, there is a common motto “alone we are rare, together we are strong”. Advocacy organizations play this important role in connecting families of rare disease , amplifying their voices and helping to improve health outcomes for people living with rare diseases. Today's podcast guest is Annie Kennedy who has over three decades of experience in advocacy work. A veteran leader in the rare disease patient advocacy movement, Annie joined the EveryLife Foundation in 2018, where she led the National Economic Burden of Rare Disease study, the development of the ICD Code Roadmap, and the community-driven Guide to Patient Involvement in Rare Disease Therapy Development. Annie previously held leadership roles at Parent Project Muscular Dystrophy (PPMD) and the Muscular Dystrophy Association (MDA). She is a sought-after advisor to patient-centered organizations and initiatives across the nonprofit and government sectors. If you are new to advocacy work or a seasoned advocate, become inspired by Annie's story to carry forward despite the road to advocacy work is non-stop, exhausting and at times, bumpy with many ups and down. Join this collective energy to advocate for rare diseases research.    Podcast Interview Questions:  1. For over three decades your advocacy work has been critical to amplifying the voices and you are currently the Director of Chief of Policy, Advocacy, & Patient Engagement for the EveryLife Foundation for Rare Diseases. Can you share with our listeners the mission of the EveryLife Foundation? What were major accomplishment made? And how can they get involved? 2. EveryLife Foundation for Rare Diseases also plays important roles in advancing newborn screening advocacy in the United States. What is your vision for how stakeholders across newborn screening and the rare disease community can work together? 3. EveryLife Foundation led a study to assess the total economic burden of 379 rare diseases in 15.5 million individuals in the United States in 2019.  The total economic burden was $997 billion. What were your key takeaways from this important study and how can the results inform researchers, clinicians, policy makers, and other key stakeholders? 4. Prior to the EveryLife Foundation, you were involved in the Parent Project Muscular Dystrophy (PPMD) and the Muscular Dystrophy Association (MDA). In that time, you helped lead the legislative efforts around passage and implementation of the MD-CARE Act (2001, 2008, 2014), the Patient Focused Impact Assessment Act (PFIA) which became the Patient Experience Data provision within the 21st Century Cures Act (sec 3001). Congratulations, these are incredibly impactful efforts. Can you tell our listeners  about the ‘behind the scenes' activities that were undertaken to lead these efforts and the implementation strategy.  5. February is a special month. Every year, last day of February is a day to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families. What are some rare disease day activities taking place? 6. Are you involved in training the next generation of advocates, and what do you tell them about newborn screening research? 7. How did you know leading advocacy work was your calling? Can you share your career journey? 8. The road to advocacy work is non-stop, and at times, bumpy, do you have any stories of inspiration that keep you going?  9. How can NBSTRN assist in you advocacy work? 10. What does NBS research mean to you?

Legal barriers exist for many good reasons, but can block our pathway in making the changes needed to help patients in the current climate. The panel addresses: Protocols that require approval from legal and complianceR&D and compliance, breaking down the silos and working jointly for patient needsHow to bring the patient voice to legal and compliance initiatives that impact patients?What are the next steps? What initiatives could legal/compliance be a part of with patient engagement to gain an understanding of the impact and urgency of their approvals? Led by: Marilyn Metcalf, PhD, Senior Director, Patient-Focused Development, Global Medical, GSK Panelists: Roslyn Schneider MD, VP, Scientific, Medical and Patient Affairs, Theravance Biopharma USParthena Psyllos, Senior Corporate Counsel, Clinical Development Legal, PfizerSue Gregory, Former Managing Counsel/Executive Director, GSKCandace Lerman, Patient Advocate and AttorneyKate Harr-Sponsler, Associate General Counsel – Global Commercial, Spark Therapeutics Learn more about the Patients as Partners in Clinical Research conference at www.patientsaspartners.org

For many years, Pfizer has been a leader in the writing of plain language summaries. Now they're partnering with diverse patient advocates to develop guidance on how to co-author scientific publications that are relevant to patients and written in language they can understand. Hear how Pfizer is working with patient advocates to co-develop this internal process and what the impact has been so far in involving patients in this new way. Angela Sykes, Director, Team Leader, Publications Management Team, PfizerTrishna Bharadia, Health and Patient Engagement Advocate & Consultant Learn more about the Patients as Partners EU conference at www.patientsaspartners.org

Episode 58 of the Long Covid Podcast is a chat with Fiona Jones, Co-lead of the LISTEN trial which is funded by the NIHR and is currently recruiting in parts of England & Wales.We chat about the 2 parts of the trial, how it's been set up and the benefit of their patient involvement both for the researchers & the the patients themselves.Home (listentrial.co.uk)What do people with long Covid think of LISTEN? (listentrial.co.uk)~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~The Long Covid Podcast is self-produced & self funded. If you enjoy what you hear and are able to, please Buy me a coffee or purchase a mug to help cover costs.Share the podcast, website & blog: www.LongCovidPodcast.comFacebook @LongCovidPodcastInstagram & Twitter @LongCovidPodFacebook Support GroupSubscribe to mailing listPlease get in touch with feedback and suggestions or just how you're doing - I'd love to hear from you! You can get in touch via the social media links or at LongCovidPodcast@gmail.com Support the show

Episode 36 of the Long Covid Podcast is a chat with Dr Mark Faghy about the work he and his team are doing to support rehabilitation for Long Covid, based at the university of Derby.The project has many arms and he explains all the different bits they are looking into, and how important listening to the patient voice is. Although all things take time - it's good that Mark & his team are looking to do things right - and I'm looking forward to seeing how things go forward.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~The Long Covid Podcast is self-produced & self funded. If you enjoy what you hear and are able to, please Buy me a coffee or purchase a mug to help cover costs.Share the podcast, website & blog: www.LongCovidPodcast.comFacebook @LongCovidPodcastInstagram & Twitter @LongCovidPodFacebook Support GroupSubscribe to mailing listPlease get in touch with feedback and suggestions - I'd love to hear from you! You can get in touch via the social media link or at LongCovidPodcast@gmail.comDiscovery MattersA collection of stories and insights on matters of discovery that advance life...Listen on: Apple Podcasts Spotify Support the show

In this episode, Antonia and Andrew discuss a selection of articles from the May 4, 2022 issue of JBJS, along with an added dose of entertainment and pop culture. Listen at the gym, on your commute, or whenever your case is on hold! Articles Discussed: Conditionally Essential Amino Acid Supplementation Reduces Postoperative Complications and Muscle Wasting After Fracture Fixation. A Randomized Controlled Trial, by Hendrickson et al. Patient and Surgeon Ratings of Patient Involvement in Decision-Making Are Not Aligned, by Alokozai et al. The Effect of Sex Hormone Deficiency on the Incidence of Rotator Cuff Repair. Analysis of a Large Insurance Database, by Smith et al. Acute Compartment Syndrome Modeling with Sequential Infusion Shows the Deep Posterior Compartment Is Not Functionally Discrete, by Schupbach et al. Osseous Morphological Differences in Knee Osteoarthritis, by Siddiqi et al. Combined Surgical Dislocation and Periacetabular Osteotomy for Complex Residual Legg-Calvé-Perthes Deformities. Intermediate-Term Outcomes, by Nepple et al. Taper Material Loss in Total Hip Replacements Is It Affected by Joint Friction?, by McCarty et al. The Long-Term Clinical Results of Total Talar Replacement at 10 Years or More After Surgery, by Morita et al. Link: JBJS website: https://jbjs.org/issue.php Sponsor: This episode is brought to you by the Miller Review Course. Subspecialties: Basic Science Trauma Pediatrics Hip Knee Orthopaedic Essentials Foot & Ankle Shoulder

Research and practice in health and social care needs patients to be meaningfully involved in gathering evidence and making the decisions that impact their lives. This approach improves decision making and delivers better outcomes. Professor Jules Pretty speaks to Senior Research Officer Tracey Johns, Research Officer Sally Burrows and Professor Peter Beresford from the School of Health and Social Care at the University of Essex. As Sally and Tracey say: "Our work is about brokering conversations between everyone who has an interest in health and social care, especially those with the greatest needs and vulnerabilities. We listen to people in the streets, in cafes and in community centres. We listen to people through their trusted intermediaries." You can read more about their work in their blog at: www.essex.ac.uk/blog Peter adds that COVID-19 has not helped patient involvement: "Among the many massive consequences of COVID-19 is its highlighting of the fragility of public and patient involvement in health and social care research. When we most needed the crucial evidence that comes from inclusive involvement, it wasn’t being collected." Again read more at: www.essex.ac.uk/blog

“If we can identify more quickly what is going on with children, then we can treat them faster, and hopefully halt progression or have early intervention, or make a change, bring communities together, so we can understand what's similar and different across these different diseases.”  In this week's episode of The G Word, Vivienne Parry is joined by Dr Christina Waters, Senior Vice President of Genomic Insights and Solution at Congenica and Founder of Rare Science, a non-profit that accelerates treatments for children with rare diseases.  Christina discusses her work with Rare Science, patient involvement and genetic interpretation. She also discusses her upbringing and the merits of industry.

We have found in all the years we have been treating animals that the best results come when the owner/client/trainer/rider/groom/human are  involved directly with the animals care. Giving them something to do in the meantime helps speed healing, strengthen the human/animal bond and creates a better pack mentality. Animals are part of our team. When something happens to them it affects both partners in the relationship. The more involved you get the client the better the results, the follow through and the speed of recovery. Listen along and find out how we do it.

Dr Mark Kotter, surgeon scientist at the University of Cambridge, shares the journey of his personal recognition of the importance of involving patients in research design and conduct; and Toto Gronlund, from the James Lind Alliance, reinforces the value of bringing the different stakeholders together in Priority-Setting Partnerships. This is part of a special 'Research Top Tips' series, from Myelopathy Matters (Myelopathy.org) and AO Spine RECODE-DCM, as they work together to accelerate knowledge discovery that can change outcomes in DCM.

In this episode, Gözde Susuzlu, Project Coordinator, and Estefania Cordero, Project Communications Officer, at the European Patients Forum discuss the rise of patient involvement in healthcare research, the need for support and digital literacy, and the role of such programmes as EHDEN. They explore the DataSavesLives initiative and the wider European Health Data Space (EHDS) development, finishing with the insights derived from the recent EPF survey conducted on the impact of the COVID-19 pandemic on patients and patient organisation. The EPF 2021 Congress will be held virtually 26-29 October, more information here.

Prostate cancer researcher Dr Antoinette Perry gives a no-nonsense explanation of how cancer works and the reasons why treating the disease is not so simple, and Martin Sweeney gives some tips to patients on coping with cancer.Discussed on this show:Information on prostate cancer: www.cancer.ie/cancer-information-and-support/cancer-types/prostate-cancerARC Cancer Support: www.ArcCancerSupport.iePublic & Patient Involvement with the Irish Cancer Society: https://www.cancer.ie/cancer-research/about-our-cancer-research/public-and-patient-involvement See acast.com/privacy for privacy and opt-out information.

For the first episode of season 2, Dr Robert O'Connor is joined by patient advocate and cancer survivor Niamh Fortune, and consultant colorectal and general surgeon Dr Susan Moug to chat through the importance of nutrition and exercise in relation to cancer, and the simple steps that people can take to increase their own activity.Discussed on this show:Niamh Fortune cancer treatment & recovery blog: www.MeAfterC.comPublic & Patient Involvement with the Irish Cancer Society: https://www.cancer.ie/cancer-research/about-our-cancer-research/public-and-patient-involvementFurther information on exercise & nutrition: https://www.cancer.ie/cancer-information-and-support/cancer-support/coping-with-cancer/information-for-survivors/healthy-lifestyle-changes See acast.com/privacy for privacy and opt-out information.

Meet Dr. Janine Winterbottom, an Advanced Nurse Specialist in Epilepsy and Independent Nurse Prescriber from The Walton Centre NHS Foundation Trust in Liverpool, UK. Janine is doing research into how best to care for and empower women affected by epilepsy when it comes to planning children (or planning not to have children!). Janine strongly encourages Patient Involvement! Watch/listen to learn more. **FOR MORE INFO ON THE STUDY**Check out the video: epilepsypreconceptionstudyCall the research team (UK): 0151 556 3721Email the research team: preconceptionstudy@thewaltoncentre.nhs.uk**CONNECT WITH JANINE**• LinkedIn: https://www.linkedin.com/in/janine-winterbottom-209053128 • Facebook: https://www.facebook.com/janine.winterbottom.75**READ ABOUT JANINE'S WORK**• Website: https://www.thewaltoncentre.nhs.uk/News/376/new-animation-aims-to-give-epilepsy-patients-confidence-to-start-a-family.html • ResearchGate: https://www.researchgate.net/profile/Janine-Winterbottom-2 **CHECK OUT THE YOUTUBE VIDEO WITH JANINE**• YouTube: https://www.youtube.com/c/TorieRobinson**CONNECT WITH TORIE**• Website:https://www.torierobinson.com• Twitter:https://twitter.com/torierobinson10• LinkedIn:https://www.linkedin.com/torierobinson• Facebook:https://www.facebook.com/TorieRobinsonSpeaker **CHECK OUT TORIE'S YOUTUBE & BLOG**• YouTube: https://www.youtube.com/c/TorieRobinson• Blog: https://www.torierobinson.com/blog**HIRE TORIE AS A SPEAKER ON EPILEPSY, MENTAL HEALTH, DISABILITY, & DIVERSITY**https://www.torierobinson.com/contact

In this episode, Dr. Kirsten Patrick, interim editor-in-chief, chats with Francine Buchanan about her experience as a patient partner. Francine is in a unique position at the intersection of caregiver for her medically fragile son, PhD candidate in health services research, and a patient and family advisor at The Hospital for Sick Children. She wrote a Humanities article published in CMAJ called "How are we going to do this?" https://www.cmaj.ca/lookup/doi/10.1503/cmaj.210457 Dr. Kirsten Patrick also chats with Victoria Saigle, Lead of Patient Involvement at CMAJ. Victoria shares the different ways patients have been contributing to the journal in recent months and plans for the future. CMAJ is launching a new article type called 360 Cases. CMAJ's first 360 Case explores the end of life of a woman who passed away suddenly after an unexpected serious diagnosis. The article is co-written by the woman's husband, her social worker, one of her nurses and the ICU physician who treated her at the end of her life. You can read the article on our website: https://www.cmaj.ca/lookup/doi/10.1503/cmaj.210463 If you're interested in learning more about patient involvement, patient peer review, or patient authorship, contact Victoria: victoria.saigle@cmaj.ca More details are in CMAJ's Statement of Purpose for Patient Engagement https://www.cmaj.ca/statement-purpose-patient-engagement CMAJ's themed issue on patient engagement at the journal: https://www.cmaj.ca/content/193/27 Podcast transcript: https://www.cmaj.ca/transcript-210457 ----------------------------------- This podcast episode is brought to you by Audi Canada. The Canadian Medical Association has partnered with Audi Canada to offer CMA members a preferred incentive on select vehicle models. Purchase any new qualifying Audi model and receive an additional cash incentive based on the purchase type. Details of the incentive program can be found at www.audiprofessional.ca. ----------------------------------- This podcast episode is brought to you by Shingrix. Learn more at: www.shingrix.ca/en-ca/index.html ----------------------------------- Listen to Cold Steel, the official podcast of the Canadian Journal of Surgery: canjsurg.ca/podcasts ----------------------------------- Subscribe to CMAJ Podcasts on Apple Podcasts or your favourite podcast app. You can also follow us directly on our SoundCloud page or you can visit www.cmaj.ca/page/multimedia/podcasts.

Rebecca Lewis presents an interview with Patient Involvement and Volunteer Lead Diane Young, who talks about the great work of volunteers in the Royal National Orthopaedic Hospital. Plus there's music from Justine Grove and Daisy Chute.

Dr. Holly Hinson discusses her article, "Making Public and Patient Involvement in Clinical Trials More Than Aspirational" from the June issue of Neurology Clinical Practice. Resources: https://cp.neurology.org/content/10/3/188

Dr Morgan (An ICU Physician in Cardiff) have a frank and open discussion about a lot of things ICU including his book Critical which is an excellently written book and shines a light on the reality of ICU but it also a very readable book. We discuss a range of topics in this episode including ICU delirium, bereavement support for families, patient involvement in research and education and humanising ICU care. this is the first of two episodes with Dr Morgan as our discussion was too long to cram into one episode so Episode 4 will also include Dr Morgan and will finish the discussion we start in this episode. I am contactable @ICU_life on twitter and ICU.Life.And.Recover@gmail.com if you wish to email me I reference a few of my friends in this episode they can be found on twitter: Alexandra: @alexandra_DBmed Rebecca: @Resus2Runner Louise: @LifeBoatGeek And the Walking Home from the ICU podcast @HomeIcu --- Send in a voice message: https://anchor.fm/icu-life-and-recovery/message

Originally streamed live from The Institute of Engineering and Technology (IET) in London during EBPOM 2018 on www.topmedtalk.com Hear this excellent talk, for free, on this podcast. If you'd like to attend an event like this ensure your next click is here: www.ebpom.org/meetings If you have any comments or questions you'd like to send to the team email: contact@topmedtalk.com Presented by Sarah Hare, of the National Emergency Laparotomy Audit (NELA).

In this fireside chat, moderated by Ken Getz, Tufts CSDD/CISCRP and recorded at the 6th annual Patients as Partners US conference discusses the following: How do you create a culture that enables new strategic, operating and organizational models to flourish?How do you drive a patient-centric organization while continuing to execute on business imperatives? How do you balance that?How do you drive a patient-centric agenda through the value chain?How do you engage your employees and empower them to implement patient involvement strategies? And, how do you enlarge the outlook of employees who are stuck in status quo? Guests include: Julie Gerberding, MD, MPH, MerckJayne Gershkowitz, Amicus Therapeutics To learn more about the 7th annual Patients as Partners US conference happening June 29-30, 2020 in Philadelphia, PA please visit www.patientsaspartners.org

In this podcast, hear a case study from the 2019 Patients as Partners EU conference on UCB and Parkinson's UK Working Together to Improve a Phase 2 Trial through Patient Involvement. In 2018, UCB and Parkinson’s UK co-developed a workshop to enable the UCB research team to work together with people affected by Parkinson’s to discuss and develop a potential phase 2 clinical trial. The aim of the workshop was to better understand people’s thoughts on clinical trials and get feedback on key features of the potential trial to maximise appropriateness, acceptability and success. In this session, attendees hear a multi-stakeholder perspective on the collaboration, including: • How the workshop was co-developed • Benefits and impact of patient involvement • Key challenges and solutions during the collaboration • Practical tips for industry and patient organisation collaborations Speakers: Natasha Ratcliffe, PhD, Research Involvement Manager, Parkinson’s UK Elaine Sutcliffe, Patient Advocate Kate Trenam, UK Patient Advocacy and Policy Manager, UCB   The 4th annual Patients as Partners EU conference will take place on January 27-28, 2020 in London, UK. To learn more about patient centricity in R&D and the Patients as Partners EU program, visit theconferenceforum.org.

Anne MacFarlane, Professor of Primary Healthcare Research at the Graduate Entry Medical School, University of Limerick and member of UL’s Health Research Institute talks about her research in the area of Public and Patient Involvement in Research, specifically participatory health research with socially excluded communities. Recorded by GK Media Ltd.

Originally streamed live from The Institute of Engineering and Technology (IET) in London during EBPOM 2018 on www.topmedtalk.com Hear this excellent talk, for free, on this podcast. If you'd like to attend an event like this ensure your next click is here: www.ebpom.org/meetings If you have any comments or questions you'd like to send to the team email: contact@topmedtalk.com Presented by Sarah Hare, of the National Emergency Laparotomy Audit (NELA).

To prevent ticking off a box and to ensure that patient involvement is systemic and sustainable, we have to move into patient-centricity 2.0. What does this mean and how is this done so we can turn the patient voice into value, impact, and benefit? This session presented at the 2nd annual Patients as Partners EU meeting, which took place January 2018 in London, demonstrates best practices from Hoffman La Roche, Melanoma Patient Network, Patient Focused Medicines Development, and European Patients Forum. Moderated by: Bettina Ryll, PhD, Founder, Melanoma Patient Network Europe. Panelists: Nicola Bedlington, Secretary General, European Patients ForumNicholas Brooke, Chief Executive Officer, Patient Focused Medicines Development (PFMD)Irmi Gallmeier, Senior International Health Policy Leader, Patient Relations, F. Hoffman La Roche The 3rd annual Patients as Partners EU meeting will take place January 28-29, 2019 in London, UK. Find more information here.

The 2018 North American Cystic Fibrosis Conference is here! Breathe In will be recording LIVE podcasts Thursday, Friday and Saturday during the conference on the Boomer Esiason Foundation's Facebook page. In this episode, the trio is joined by Amy, 37 years old with cystic fibrosis. Amy is currently writing Drug Development Wednesday articles on Gunnar's blog. They recap the morning live stream session: airway clearance vs. exercise, airway clearance devices and disease severity. Amy has been very vocal about patient involvement in NACFC, so the conversation turns to how Cystic Fibrosis Foundation may better include patients in an event that otherwise excludes them. Finally the podcast wraps up with a few questions from live listeners and what the group is looking forward to most over the next couple of days!

Dr. Dawn Stacey, Professor at the University of Ottawa and Ian Graham, Professor at the University of Ottawa discusses patient inolvement together with Nicoline Vackerberg, Development leader at Qulturum, Region Jönköping county.

"QA, QI and Patient involvement" - originally streamed live from The Institute of Engineering and Technology (IET) in London during EBPOM 2018 on www.topmedtalk.com Hear this excellent talk, for free, on this podcast. If you'd like to attend an event like this ensure your next click is here: www.ebpom.org/meetings If you have any comments or questions you'd like to send to the team email: contact@topmedtalk.com Presented by Sarah Hare, of the National Emergency Laparotomy Audit (NELA).

Paola Kruger talks to ecancer at IFCPE 2017 about what patients can do to be more involved in their own therapy options and how the patients input can be valuable within a clinical trial. She discusses the importance of patients creating a community, allowing patients to connect, share information and support each other throughout their care.

Originally recorded during the 4th annual Patients as Partners US event held in Philadelphia, March 2017, Bristol-Myers Squibb’s Mary Stober-Murray moderates this multi-stakeholder panel to discuss what patients truly want when it comes to clinical care and patient involvement. Patients John Creveling, a Parkinson’s Foundation Research Advocate, and Deb Maskens from the International Kidney Cancer Coalition, join her and representing the industry perspective are Paul Graves from Takeda Pharmaceuticals and Dr Michelle Vichnin from Merck. Closing the gap between clinical care and patients wants/needs: • Ask patients what’s going on in their lives. • Ask patients what their goals are. • Because no one asks patients these questions, the result is they get care that’s aligned with what the doctor thinks is clinically relevant, even though it may be completely out of context to what is important to the patient. What patients want and how pharma can help: • Identify what patients and industry want respectively in terms of patient involvement and why that is meaningful for each. • What can we do to enhance this across the development pipeline? • What is getting in the way? Identify hurdles. • How can we work through this collaboratively? Initially developed out of the first DPharm event, the Patients as Partners US program seeks to understand and incorporate the patient's voice in designing clinical trials and developing a clinical endpoint, as well as vastly improve the patient's entire experience in a clinical trial. The 5th annual Patients as Partners US will be March 15-16, 2018, in Philadelphia.

Originally recorded at the inaugural Patients as Partners Europe event, held in London in February 2017. Patient, industry, and regulatory perspectives are provided by Alastair Kent of Genetic Alliance UK, Dr Anton Hoos of Amgen Europe, and Isabelle Moulon of the EMD as they discuss on innovative ways of to include patient involvement in medicines development. The Patients as Partners Europe program seeks to understand and incorporate the patient's voice in designing clinical trials and developing a clinical endpoint, as well as vastly improve the patient's entire experience in a clinical trial. The 2nd annual Patients as Partners EU event will be held January 23-24, 2018 at Radisson Blu Portman Hotel, London, UK.

It is vital to involve children, young people and families in the design, delivery and improvement of their care. Their involvement can range from individuals giving feedback, such as patient stories, to collaborative work including patient groups and communities helping to develop and commission services.In this podcast Sophie Robertson, Paediatric Department, Portsmouth Hospitals NHS Trust, Kate Pryde, Department of Child Health, University Hospital Southampton NHS Foundation Trust and Kath Evans, Head of Patient Experience - Maternity, Newborn, Children and Young People, NHS England, discuss the methods of involving patients in care, and how this can lead to meaningful participation and improvement of services.Read their ADC article on this topic:Patient involvement in quality improvement: is it time we let children, young people and families take the lead? http://goo.gl/ETgGW1

Involving pain patients in health services and learning how to self-manage pain whilst working. This programme was funded by the Big Lottery Fund’s Awards For All programme in Northern Ireland. In this edition of Airing Pain, Paul Evans travels to Northern Ireland to visit a patients’ organisation, the Patient and Client Council. The Council provides patients with an independent voice in the health and social care system by involving those who live with chronic pain in the decision-making process and supporting patients who wish to make a complaint, with the overall aim of improving patient services in Northern Ireland. Louise Skelly, Head of Operations at the Council, describes her organisation’s work promoting information and advice across the healthcare system and using patients’ experience, suggestions and stories to raise awareness of chronic pain. She highlights some of the advances and improvements that the Council has brought about in recent years. Paul also speaks to pain patient and member of the Patient and Client Council’s pain strategy group, Jay Flood Coleman, who shares his own personal experiences of chronic pain which has been complicated further by a series of health issues. Board member of the Patient and Client Council, Rena Shepherd, who herself lives with chronic pain, contributes with her first-hand expertise and explains that with little adjustment on the part of employers, employees suffering from long-term pain conditions can still work full-time and be productive, with self-management pain courses proving very beneficial. Contributors: * Louise Skelly, Head of Operations at The Patient and Client Council *Jay Flood Coleman, patient and Council strategy group member *Rena Shepherd, board member of the Patient and Client Council First broadcast 07.05.13 #benefits #childrenandyoungpeopleinpain #chronicpainasaconditioninitsownright #educatinghealthcareprofessionals #generalpractitioners(GPs) #integratedhealthandsocialcarehealthcarepolicy #occupationaltherapy #painmanagementprogrammes #patientperspective #work

Tom Haswell discusses how he has progressed from being diagnosed with serious lung cancer to becoming involved in various patient groups, working to improve the available of treatment options and helping to improve the standard of care offered to patients in future. Mr Haswell outlines the increase in patient involvement he has seen and stresses the advantages patients can experience taking part in clinical trials.