28 APR

Empowering Patients through Access to Medical Records | Richard Fitton

Join us for an enlightening conversation with Dr Richard Fitton, retired GP and long-time champion of patient access to electronic medical records, as we explore what it really means to share data, power, and responsibility with patients. Richard’s journey spans more than four decades of pioneering work: from early computerised records in the 1980s, to leading one of the first NHS pilots for online patient record access, moderating the WHO working group that drafted the 8th Patient Right of the WHO Patient Safety Charter – the right to access your own records. In this episode, we unpack what medical records are, who they serve, and how they can enable genuine patient-clinical partnership. We also explore global barriers digitization and how they can be overcome, sharing hopeful stories of how small efforts have scaled to influence national guidance and international policy. This episode offers a practical and deeply human vision for how medical records can support patients in becoming informed partners in their own care. Chapters: 00:00:00 - Introductions and episode overview00:03:21 - Defining electronic health records00:12:06 - Richard's journey with health records00:22:11 - The Harold Shipman serial killer case00:26:36 - Sharing records with patients00:32:28 - Barriers and global disparities00:36:25 - Driving global adoption00:42:59 - Initiatives to overcome barriers00:50:22 - Advice for clinicians00:53:28 - Reflections with Caitlin and ClarindaResources and abbreviations: 8th Patient Right of the WHO Patient Safety CharterLawrence Weed Problem-Oriented Medical RecordBlack ReportAcheson ReportHarold Shipman caseDepartment of Health Copying Letters to Patients working groupNHS – National Health Service (UK)GP – General PractitionerEHR / EHRs – Electronic Health Record(s)GMC – General Medical Council (UK)WHO – World Health OrganizationICD – International Classification of Diseases (referenced via “Reed codes from ICD and SNOMED”)SNOMED – Systematized Nomenclature of Medicine – Clinical TermsWMJ - World Medical JournalNICE - National Institute of Clinical Excellence Prior episode with rare disease advocate Emily Reuben OBEHave feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

1 hr

30 MAR

Developing Patient-Centred Outcomes Measures | Jennifer Bright

Join us for an enlightening conversation with Jennifer Bright, President and CEO of the International Consortium for Health Outcomes Measurement (ICHOM), where we talk about redefining value in healthcare by measuring what truly matters to patients. Jennifer is a long-time leader in patient-centered health policy and outcomes, with past executive roles at the Innovation and Value Initiative, the Society for Healthcare Epidemiology of America, and Mental Health America. She is also Founder and President of Momentum Health Strategies, Chair of the Board at Mental Health America, and an editor for the American Journal of Accountable Care and the Journal of Patient Experience. Drawing on both her professional expertise and deeply personal experiences with her parents’ cancer journeys, she brings a powerful perspective on why patients must be at the center of every health decision. In this episode, we unpack the world of outcomes and outcomes measures—what they are, why traditional survival-focused metrics are not enough, and how patient-centered outcomes can transform clinical care, research, and policy. Jennifer shares her personal story, explains how ICHOM co-creates standardized outcome sets with patients and clinicians worldwide, and explores the barriers and opportunities in making outcomes-based, patient-centered care the global norm. Whether you’re a patient, clinician, policymaker, or researcher, this episode offers a hopeful, practical vision for measuring and delivering better health for all. Chapters: 0:00 - Introductions and episode overview 1:30 - Defining outcomes and outcomes measures 6:50 - What really matters to patients 9:26 - Jennifer's personal story and motivations 14:23 - An overview of ICHOM's work 17:09 - Patient involvement in developing outcomes measures sets 19:03 - The ICHOM process for outcomes measures sets 26:57 - Value and real-life applications of outcomes measures 29:52 - Eligibility criteria for patient involvement 34:30 - Using outcomes measures for shared decision-making 39:54 - Global adoption of outcomes measures 43:32 - Overcoming barriers and challenges 50:52 - Vision for the future 53:25 - Advice for patients looking to get involved 55:38 - Reflections with Caitlin and Clarinda Resources and abbreviations: Book: Redefining HealthcareNational Health Council Fair-Market Value CalculatorICHOM Patient Partner AllianceSwiss Government National Quality Strategy for HealthcareNHS - National Health Service, UKCMS - Centers for Medicare and Medicaid Services, USHave feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

1 hr

26 FEB

Advancing Rare Disease Care through Patient Advocacy | Emily Reuben OBE

Join us for this special Rare Disease Day episode with Emily Reubin OBE, Co‑founder and CEO of Duchenne UK, as we talk about transforming grief into impact and reshaping rare disease care through patient advocacy. Emily co-founded Duchenne UK after her son was diagnosed with Duchenne muscular dystrophy (DMD). Emily launched the Duchenne Children’s Trust in 2012, which later merged with Joining Jack to become Duchenne UK. Emily is a leading advocate for patients, representing the community at the FDA, EMA, MHRA, NICE, and SMC. Emily was awarded an OBE in 2023 for her services to people with DMD. In this episode, we delve into the realities of rare disease — the underappreciated “cluster bomb” impact on families, the emotional toll of diagnosis, and why current systems are not built for complex paediatric conditions. Emily shares her personal story of her son Eli’s diagnosis, the early years of devastation, and how she and co‑founder Alex Johnson built Duchenne UK into international force in disrupting clinical trials, standards of care, and health technology assessment for rare disease. Emily offers deeply honest reflections, practical insight, and tangible examples for rare disease patients, caregivers, advocates, and all stakeholders involved in rare disease care. Chapters 00:00 – Introductions01:40 – Emily's story13:00 – Starting a rare patient advocacy group16:55 – Challenges in rare disease care20:12 – Role of advocacy in advancing rare disease care27:35 – Getting into the right rooms (and feeling welcome)30:34 – Redefining standards of care35:55 – Overcoming reimbursement challenges (Project Hercules)49:52 – Emily's long‑term dream for rare disease care50:34 – Advice to rare disease advocates and healthcare stakeholders54:01 – Reflections with Caitlin and ClarindaResources & abbreviations DMD Hub and Clinical Trial FinderDMD Care UKProject HerculesEQ‑5D DMD‑QOLCharley's FundSpinal Muscular Atrophy (SMA) UKCystic Fibrosis (CF) TrustNMO – neuromyelitis optica The Sumaira Foundation (TSF)FDA – US Food and Drug AdministrationEMA – European Medicines AgencyEUPATI – European Patients Academy for Therapeutic InnovationNHS – National Health Service (UK)MHRA – Medicines and Healthcare products Regulatory Agency (UK)NICE – National Institute for Health and Care Excellence (UK)SMC – Scottish Medicines ConsortiumHave feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

1 hr

26 JAN

Galvanising Multistakeholder Collaboration for Meaningful Change | Derick Mitchell

Join us for an inspiring conversation with Derick Mitchell, Executive Director of Patient Focused Medicines Development (PFMD), adjunct professor at Trinity College Dublin, and a dedicated leader in patient engagement and multistakeholder healthcare innovation. Derick’s journey has taken him from translational research to his previous role as CEO of IPPOSI—the largest patient network in Ireland—where he spent close to a decade championing partnerships between patients, government, academia, and industry to shape patient-centered health policy. At PFMD, he now leads international efforts to bring all stakeholders together to transform healthcare for and with patients. In this episode, we delve into why multistakeholder collaboration is so crucial for patient engagement (and tough to do well!), and how we can move beyond good intentions to lasting change. Derick shares practical examples from Ireland and globally; tackles the barriers that keep patients’ voices from truly shaping decisions; and offers actionable steps for building more inclusive, impactful partnerships. Whether you’re a patient, professional, or changemaker, this episode is packed with insights on turning collaboration from a talking point into real, everyday practice. Chapters 0:00 - Introductions and episode overview2:00 - Derick's journey into patient engagement6:04 - Challenges with embedding patient voices12:46 - Defining value for different stakeholders17:09 - Ensuring representation and diversity26:45 - Rewards and incentives for collaboration28:46 - Real-world examples33:22 - Evolution of collaborative patient engagement37:00 - Why collaboration matters for healthcare transformation44:44 - Barriers to multistakeholder collaboration50:13 - Advice for driving collaboration58:44 - Reflections with Caitlin and ClarindaResources & abbreviations AI – Artificial IntelligenceCTTI – Clinical Trials Transformation InitiativeHTA – Health Technology AssessmentIHI – Innovative Health Initiative IPPOSI – Irish Platform for Patient Organisations, Science, and IndustryIrish Rare Disease PlanPatient Engagement Management SuitePFMD – Patient Focused Medicines DevelopmentPPI Ignite The SynergistPCORI – Patient-Centered Outcomes Research InstitutePEOF – Patient Engagement Open ForumHave feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

1hr 3min

15/12/2025

Reflections on 2025, Hopes for 2026 | The Community Speaks

What was one key learning around patient engagement that you're taking away from 2025? What gave you hope in patient engagement and advocacy this year? What’s one thing you’d love to see in patient engagement next year? These are the questions that we asked not one... not two... but FIVE amazing guests for this special year-end episode of Not Just Patients. Listen to our incredible guests Michelle Warner, Connie Montgomery, Dr Ratna Devi, Richelle Flanagan, and Keith Berelowitz, as they share their key highlights from 2025 and hopes for 2026. Wishing all our listeners a happy holidays and happy new year! Any speaker, topic, or event requests for 2026? Please feel free to reach out :) Speaker bios: Michelle Warner (01:06) is Co-Founder of The Patient Project, aiming to bring science and patients together as equal partners, sharing ambitious patient-focused goalsConnie Montgomery (06:14) is a living experience expert (LEE) diagnosed with Factor Seven Deficiency and Pemphigus Vulgaris, serving as a global patient advocate with several national and international entitiesDr Ratna Devi (09:59) is the CEO and Co-Founder of DakshamA Health & Education, leads Indian Alliance of Patient Groups (IAPG), and is a Board Member for International Alliance of Patient Organisations (IAPO), Health India Alliance (HIA), and Asia Pacific Alliance for Rare Disease Organisations (APARDO)Richelle Flanagan (14:29) is a registered dietitian living with young-onset Parkinson’s, who has co-founded digital health solutions including My Moves Matter and the Women’s Parkinson’s ProjectKeith Berelowitz (18:13) is the Founder and CEO of pRxEngage, a platform designed to engage, educate, and empower people to take part in clinical research with confidenceHave feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

30 min

24/11/2025

Co-Creating HealthTech Solutions | Cécile Tardy-Srinivasan

Join us for an insightful conversation with Cécile Tardy-Srinivasan, EUPATI Fellow, patient advocate, and leader of the DayOne Accelerator, as we explore what it takes to bring meaningful patient and stakeholder involvement to health tech innovation. With over 20 years of cross-sector experience bridging pharma, healthcare technology, and patient advocacy, Cecile draws upon her own journey as a rare disease patient to share unique perspectives on connecting patients, clinicians, innovators, and industry. As a mentor, advocate, and innovation accelerator, she is dedicated to breaking down barriers and enabling collaboration for patient-centred solutions. In this episode, we dive into the vast and evolving landscape of health tech—what it encompasses, how patient voices can shape technology, and why thoughtful patient involvement is critical from design to implementation. Cécile shares her story, examines key challenges for start-ups, highlights real examples of patient-led solutions, and offers practical advice for both innovators and patients seeking to drive change in healthcare. Chapters 0:00 - Introductions and episode overview1:52 - Defining health tech8:42 - Cécile's story and journey into innovation11:34 - The evolution and challenges of health tech19:42 - The DayOne Accelerator Programme25:52 - Patient involvement in health tech37:04 - Cecile’s vision for the future of health tech40:04 - Advice for health tech innovators and patients45:08 - Reflections with Caitlin and ClarindaResources and Abbreviations DayOne Accelerator IBDreliefAncora - Find Cancer Clinical TrialsTrial HubEUPATI – European Patients’ Academy on Therapeutic InnovationFDA – Food and Drug Administration (USA)PFMD – Patients Focused Medicines DevelopmentCRO – Contract Research OrganizationR&D – Research and DevelopmentHTA – Health Technology AssessmentAI – Artificial IntelligenceHave feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

55 min

15/10/2025

LIVE: National PPI Festival Launch at the Royal College of Surgeons in Ireland

Love to listen or prefer to watch? For the first time, the video recording of this episode is available on our YouTube channel: https://www.youtube.com/watch?v=ansbXaF9B6c Join us for the first in-person recorded episode of Not Just Patients! We were so excited to be invited to the launch of the National PPI Festival in Dublin, organised by the PPI Ignite Network and the Royal College of Surgeons in Ireland (RCSI). Listen (or watch!) as we speak with our 3 amazing guests about their experiences of patient and public involvement (PPI) in research, from their differing perspectives of an early career researcher, a patient contributor, and a research group leader. Guest profiles: Dr Viveka Guzman is a Research Associate at Imperial College London. She is also part of the Patients Experience Research Centre, where she promotes participatory approaches and supports patients and the public to get involved in research. Before her current role, Viveka completed her PhD at RCSI through the SPHeRE Programme, where she collaborated closely with an advisory panel of five public contributors across several stages of the project. Clíodhna Ní Bhroin has a degree in Botany, an MSc in Biodiversity & Conservation and also requalified in IT. In 2017 she had a stroke that changed the course of her life. Wanting to share her experience to improve the experience of those who came after her, Clíodhna took part in PPI through RCSI, and in 2020 she was invited to take part in the Improving Pathways for Acute STroke And Rehabilitation or (iPASTAR) PhD programme as a Patient Champion. Professor Fergal O’Brien is Professor of Bioengineering & Regenerative Medicine, Deputy Vice Chancellor for Research & Innovation, and Head of the Tissue Engineering Research Group (TERG) in RCSI. In his innovative research, he combines cutting-edge bioengineering with meaningful PPI. Fergal’s team partnered with the Research Ireland Advanced Materials and Bioengineering Research (AMBER) Centre and the Irish Rugby Football Union Charitable Trust to co-design a novel spinal cord injury implant alongside a PPI advisory group of clinicians, researchers, and individuals living with spinal cord injury. This advisory group offered valuable insights into the realities of spinal cord injuries and possible treatment strategies. On this live episode of Not Just Patients, we explore PPI in practice and the transformational impact it can have on research itself and on all the people involved. Chapters: 0:00 - Introductions 6:17 - Dr. Viveka Guzman: perspectives of an early career researcher 17:06 - Clíodhna Ní Bhroin: perspectives of a patient contributor 28:35 - Prof. Fergal O'Brien: perspectives of a research group and institutional leader 43:48 - Panel discussion 1:03:13 - Audience Q&A 1:11:19 - Advice for stakeholders looking to practice PPI better 1:15:02 - Summing it all up Resources: EUPATI - European Patients Academy on Therapeutic Innovation Have feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

1hr 18min

24/09/2025

Raising Public Awareness through Multi-Channel Advocacy | Trishna Bharadia

Patient advocate and engagement consultant Trishna Bharadia joins Caitlin and Clarinda to explore how advocacy can be supercharged by tapping into diverse channels, from niche community networks to public mass-media platforms that reach millions. Trishna works with multiple stakeholders to embed the patient voice into medicines development and healthcare. She's a visiting lecturer on patient engagement at the Centre for Pharmaceutical Medicine Research at King's College London and Co-Chair of the Working with Patients and Communities Forum at the Faculty of Pharmaceutical Medicine (FPM). Trishna is also a patron and ambassador for several health and disability-related organisations, including the International Society of Medical Publications Professionals (ISMPP) and the Patient Information Forum. Her many awards include a Points of Light from the UK Prime Minister office for her work with patient communities and a Pharma Voice 100 honour for outstanding contributions to the life sciences. On this episode, Trishna shares fascinating stories of her multifaceted advocacy, from Strictly Come Dancing/Dancing with the Stars to radio, journals, social media, and getting her parents involved. She also offers excellent advice for getting started in advocacy, navigating criticism, and owning your story. Chapters 00:00:00 - Introductions00:01:46 - Trishna's journey into advocacy00:08:02 - Importance of raising awareness00:13:43 - Exploring different advocacy channels00:21:05 - Strictly Come Dancing experience00:30:05 - Normalising disability/chronic illness in mass media00:33:36 - Caregiver/family involvement in advocacy00:38:59 - Countering cultural and societal stigma00:43:42 - Advice for other patient advocates00:51:10 - Reflections with Caitlin and ClarindaResources and Abbreviations MS - multiple sclerosisMS SocietyAsian MSMS Society Stop MS AppealISPEP -International Society for Patient Engagement ProfessionalsPatient Information Forum (PIF)NMO - neuromyelitis optica spectrum disorderHave feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

58 min

Not Just Patients

Episodes

Empowering Patients through Access to Medical Records | Richard Fitton

Developing Patient-Centred Outcomes Measures | Jennifer Bright

Advancing Rare Disease Care through Patient Advocacy | Emily Reuben OBE

Galvanising Multistakeholder Collaboration for Meaningful Change | Derick Mitchell

Reflections on 2025, Hopes for 2026 | The Community Speaks

Co-Creating HealthTech Solutions | Cécile Tardy-Srinivasan

LIVE: National PPI Festival Launch at the Royal College of Surgeons in Ireland

Raising Public Awareness through Multi-Channel Advocacy | Trishna Bharadia

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