Not Just Patients

Caitlin and Clarinda
  • 0.0 (0)
  • Medicine
  • Monthly

Hello and welcome to Not Just Patients, a podcast where we break barriers to meaningful patient involvement in healthcare. We’re your hosts, Caitlin Rich and Clarinda Cerejo. We’re both rare disease patients and qualified patient experts. And we are so much more. Join us and our guests as we challenge patient stereotypes, highlight successful collaborations in healthcare, and share energizing tales of turning adversity into advocacy. Have feedback or suggestions for us? We'd love to hear from you! Email us at info@notjustpatients.com or find us on LinkedIn.

  1. Ensuring Patient Safety in Clinical Trials and Medical Practice | Stacy Hurt

    1 day ago

    Ensuring Patient Safety in Clinical Trials and Medical Practice | Stacy Hurt

    Join us for a powerful conversation with Stacy Hurt as we dive into what patient safety really means in clinical trials and everyday medical practice. Stacy is Chief Patient Officer at Parexel, where she leads efforts to embed the patient voice across clinical research and drug development. A patient, survivor, and caregiver herself, Stacy brings both professional expertise and lived experience to her work—advocating for more inclusive, patient‑centred trials and meaningful engagement throughout the research journey. She is a widely respected leader and speaker dedicated to improving how research is designed, conducted, and experienced by patients worldwide. In this episode, Stacy draws on both her professional expertise and deeply personal experiences as a patient and caregiver to help us unpack patient safety: what it is; why it’s so poorly understood; and how fear, blame, and broken feedback loops stop patients and clinicians from reporting what’s really happening. Chapters: 0:00 - Introductions and episode overview1:07 - Stacy’s story - diagnostic and surgical errors5:26 - Defining patient safety and adverse events11:38 - Barriers to reporting adverse events14:15 - Patient safety in the drug development process17:11 - Patient involvement to improve trial safety20:40 - Patient safety monitoring in medical practice25:57 - Adverse event reporting by pharmaceutical companies29:28 - Collaborating to improve patient safety33:19 - Informed consent and patient education materials36:59 - Empowering patients to report symptoms and side effects42:36 - A call to action49:19 - Stacy's long-term dream for patient safety52:41 - Reflections with Caitlin and Clarinda Resources and abbreviations: SIDM -  Society to Improve Diagnosis in Medicine (no longer functional)21st Century Cures ActAMA – American Medical AssociationICU - Intensive Care UnitGLP‑1 - Glucagon‑Like Peptide‑1 (therapies often used for weight loss)CRO - Contract Research OrganisationAPAC - Asia‑Pacific regionHTA - Health Technology AssessmentPROMS - Patient‑Reported Outcome MeasuresPREMS - Patient‑Reported Experience MeasuresHCPs - Healthcare professionalsEUPATI - European Patients Academy on Therapeutic InnovationTufts Clinical and Translational Science InstituteScripps Research Digital Trials CenterMHRA -  Medicines and Healthcare products Regulatory AgencyMHRA Yellow Card SchemeHave feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

    59 min
  2. Creating Space for Patients in Medical Publishing | Emma Doble

    25 May

    Creating Space for Patients in Medical Publishing | Emma Doble

    Joining Caitlin and Clarinda for this episode of Not Just Patients is Emma Doble, Patient and Public Strategy Editor at The BMJ, for a powerful conversation about what it really means to embed patients in medical publishing in more than just name. Emma leads the BMJ’s patient partnership strategy across the journal and BMJ Group, including the What Your Patient Is Thinking series, patient and public partnership at BMJ events, and support for over 70 BMJ Group journals. She was awarded a Made with Patients Award by the Patient Engagement Open Forum for her work, is a visiting lecturer at King’s College London, and an independent patient advocate advising universities, governments, and NGOs on patient partnership. Drawing on both her professional experience and her personal journey living with type 1 diabetes since childhood, Emma offers an inside look at how one of the world’s leading medical journals has shifted from “managing informed patients” to recognizing patients as experts and partners in research, governance, and editorial decision-making. Join us as we demystify medical publications, explore the BMJ’s patient partnership strategy, discuss the culture change required to bring patients into an “ivory tower” space, and break down what true patient involvement could look like for both patients and publishers.  Chapters 00:00:00 - Introductions and episode overview 00:01:55 - Understanding the medical publishing process 00:08:00 - The BMJ's Patient Partnership Programme 00:12:31 - Breaking into the 'ivory tower' 00:15:33 - Value of patient involvement in medical publishing 00:20:08 - Emma's personal story and career path 00:27:36 - Avenues and qualifications for patient involvement 00:34:32 - Increased acceptance of patients as authors 00:39:52 - Barriers to patient involvement 00:44:17 - Initiatives to help patients get involved 00:48:25 - Emma's long-term dream for medical publishing 00:52:00 - Emma's advice for patients, journals, and publishers 00:54:50 - Reflections with Caitlin and Clarinda Resources and abbreviations BMJ – The British Medical Journal (and BMJ Group)BMJ patient and public partnership homepagePatient Engagement Open Forum (PEOF) Caitlin and Clarinda's featured interview in the World Medical JournalBMJ What Your Patient Is Thinking SeriesEmma's original article in the What Your Patient is Thinking SeriesICMJE  (International Committee of Medical Journal Editors) authorship criteriaThe BMJ patient and public reviewer sign upJournal of Patient ExperienceJournal of Patient Centricity [Disclosure: Clarinda is on the Editorial Board]Cochrane Have 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
  3. Empowering Patients through Access to Medical Records | Richard Fitton

    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
  4. Developing Patient-Centred Outcomes Measures | Jennifer Bright

    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
  5. Advancing Rare Disease Care through Patient Advocacy | Emily Reuben OBE

    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
  6. Galvanising Multistakeholder Collaboration for Meaningful Change | Derick Mitchell

    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
  7. Reflections on 2025, Hopes for 2026 | The Community Speaks

    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
  8. Co-Creating HealthTech Solutions | Cécile Tardy-Srinivasan

    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
See All (28)

About

Hello and welcome to Not Just Patients, a podcast where we break barriers to meaningful patient involvement in healthcare. We’re your hosts, Caitlin Rich and Clarinda Cerejo. We’re both rare disease patients and qualified patient experts. And we are so much more. Join us and our guests as we challenge patient stereotypes, highlight successful collaborations in healthcare, and share energizing tales of turning adversity into advocacy. Have feedback or suggestions for us? We'd love to hear from you! Email us at info@notjustpatients.com or find us on LinkedIn.

Information

  • Creator
    Caitlin and Clarinda
  • Years Active
    2024 - 2026
  • Episodes
    28
  • Rating
    Clean
  • Copyright
    © 2026 Not Just Patients
  • Show Website
    Not Just Patients