Not Just Patients

Caitlin and Clarinda
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Hi! We’re Caitlin Rich and Clarinda Cerejo, Co-Hosts of Not Just Patients, a global podcast that aims to bring stakeholders together and break barriers to meaningful patient involvement in healthcare.We both live with rare diseases, are EUPATI Fellows, and work in healthcare research and communications. Over the past two and a half years, we have hosted in-depth conversations with a range of healthcare stakeholders to examine how healthcare can become more inclusive, collaborative, and effective.We were recently interviewed by the World Medical Journal, won the Acquisition International Non-Profit Organisation Award for Excellence in Driving Patient Engagement 2025, and were named Patient Advocacy Podcast of the Year in the Corporate LiveWire Awards 2025/2026.Our guests are patient advocates, healthcare professionals, industry representatives, and other stakeholders who interact with the health system at large. Each of our guests brings in a unique perspective on patient engagement and shares stories of initiatives they’ve championed or been involved in.We will soon be launching a special series on Underserved Communities in Healthcare. The series will explore what meaningful patient involvement looks like for communities that healthcare systems too often fail to adequately see, hear, or design for. This includes children and young patients, disabled and neurodivergent people, LGBTQIA+ communities, racial and ethnic minorities, and people from lower- to middle-income countries. 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. 23 Oct ·  Video

    Low- to Middle-Income Countries: Underserved in Healthcare | Benjamin Akilimali Myatsi

    Welcome to another episode of our series on Underserved Communities in Healthcare, where we are focusing on the needs of people in low- to middle-income countries. Caitlin and Clarinda are joined by Benjamin Akilimali Myatsi, Founder and President of the Association Congolaise du Vitiligo in the Democratic Republic of the Congo (DRC). Having lived with vitiligo since childhood, Benjamin has experienced stigma, misunderstanding, and isolation. Those experiences led him to patient advocacy and a commitment to ensuring that people living with vitiligo in his country can be involved in healthcare, not as mere recipients but as partners in shaping it. In this important conversation, we discuss the barriers people face when seeking care in the DRC and more broadly in low-to middle-income countries, including limited access to reliable information, a shortage of specialists, long travel distances, out-of-pocket costs, and stigma.  Benjamin also shares what gives him hope, what he would want to borrow from high-income countries, and a powerful message to global healthcare leaders.  Our thanks to our Episode Supporter, The Sumaira Foundation, for making this episode possible. The Sumaira Foundation is dedicated to raising awareness of rare neuroimmune conditions, building communities of support for patients and their caregivers, and supporting and leading research and advocacy efforts on behalf of patients. Note: The Sumaira Foundation provided financial support but was not involved in any of the content, editorial, or production-related decisions for this episode. This conversation was conducted with the help of an interpreter, with Benjamin speaking French and Caitlin and Clarinda speaking English. Chapters: 00:00:00 - Introductions and episode overview 00:02:16 - Benjamin's journey into patient advocacy  00:04:48 - Challenges with accessing specialists and getting a diagnosis 00:10:36 - Financial affordability of healthcare and medication 00:13:24 - Influence of culture and stigma on healthcare access 00:15:12 - Reflections on challenges in low- to middle-income countries 00:26:53 - Patient involvement in healthcare decisions 00:29:50 - Community-led solutions 00:33:29 - Borrowing from high-income countries 00:35:39 - Call to action for healthcare leaders Resources and Abbreviations: DRC - The Democratic Republic of The CongoNational Policy for Rare Disease in IndiaLet us know what you thought of this episode Follow us or subscribe wherever you get your podcasts Website: notjustpatients.com LinkedIn: Not Just Patients Instagram: @notjustpatients Substack: https://notjustpatients.substack.com/ Have feedback or suggestions? We'd love to hear from you. Email: info@notjustpatients.com

    Low- to Middle-Income Countries: Underserved in Healthcare | Benjamin Akilimali Myatsi

  2. 6 Oct ·  Video

    THE LGBTQIA+ COMMUNITY: Underserved in Healthcare | Carter Hemion & Simon Stones

    Welcome to this episode focused on the LGBTQIA+ Community as an Underserved Community in Healthcare!   In this episode, Caitlin and Clarinda are joined by Carter Hemion, a rare disease patient advocate, author, and artist, and Simon Stones, a patient and caregiver advocate and healthcare communication specialist. Carter lives with a connective tissue disorder and multiple intersecting identities, including being transgender, non-binary, queer, and asexual. Their advocacy began in childhood with everyday battles associated with identity and grew into a broader mission to tackle systemic barriers in healthcare. Simon has lived with multiple immune-mediated inflammatory diseases since childhood and has also been a caregiver for parents with pancreatic cancer and dementia. Having come out as gay only in his late twenties, he brings an acute understanding of what it means to hide a core part of yourself in healthcare and beyond and the challenges associated with that. In this powerful conversation, Carter and Simon join our hosts to explore  WHY the LGBTQIA+ community is so often underserved in healthcare How their experiences differ from those of cisgender, heterosexual people, and how varied the experiences can be even within the broad communityHow stigma, culture, and the political situation in many countries can make honest conversations with clinicians feel unsafeWhat safe and inclusive care can look like and positive initiatives that are driving change globallyThis episode is a hard-hitting but hopeful deep dive into the healthcare experiences of the LGBTQIA+ community and what each of us can do to make care safer and more equitable for people everywhere. Chapters 00:00:00 - Introductions and episode overview 00:01:19 - Carter's and Simon's journeys into advocacy 00:05:57 - Why the LGBIQIA+ community is underserved in healthcare 00:13:07 - How healthcare experiences differ among community members 00:17:55 - Challenges across disease areas 00:22:49 - Role of stigma and culture in healthcare experiences 00:28:20 - What equitable care would look like 00:33:02 - Initiatives driving change 00:39:03 - Patient involvement shaping community outcomes 00:43:45 - Call to action for community members and healthcare leaders Resources and abbreviations Inequities in the Rare Disease Community 2024 Report from Rare Disease Diversity Coalition and National Organization for Rare DisordersRare Disease Diversity Coalition (RDCC) National Organization for Rare Disorders (NORD)FDA Accelerated Approval PathwayAccelerated Approval program from The RARE Foundation (formerly EveryLife Foundation for Rare Diseases)World Professional Association on Transgender HealthLGBTQ+ Health DisparitiesAddressing inequalities in LGBT cancer screening coverageDo cancer screening rates differ across sexual orientation and gender identity?Advocates for Trans Equality health and healthcareThe Trevor ProjectILGA (International Lesbian, Gay, Bisexual, Trans and Intersex Association) World DatabaseUK Equality Act 2010NHS England LGBT+ Health Evidence ReviewLGBT - Healthy People 2030Sex and Gender Equity in Researcher (SAGER) guidelinesSimon's review project exploring sexual health, pleasure, justice, and wellbeing in rheumatologyTerrence Higgins TrustDSM - Diagnostic and Statistical Manual of Mental Disorders Let us know what you thought of this episode Follow us or subscribe wherever you get your podcasts Website: notjustpatients.com LinkedIn: Not Just Patients Instagram: @notjustpatients Substack: https://notjustpatients.substack.com/ Have feedback or suggestions? We'd love to hear from you. Email: info@notjustpatients.com

    THE LGBTQIA+ COMMUNITY: Underserved in Healthcare | Carter Hemion & Simon Stones

  3. 21 Sept ·  Video

    DEFINING Underserved Communities in Healthcare | Ashish Rishi

    Welcome to the launch episode of our special new series on Underserved Communities in Healthcare. On this episode, Caitlin and Clarinda are joined by Ashish Rishi, Founder and CEO of Unwritten Health. Ashish has dedicated his career to making healthcare more inclusive, not as a moral cause, but as a practical necessity. He serves as a member of the Scientific Advisory Board for IHI-READI, a Horizon Europe initiative on health equity and research infrastructure. By consistently asking 'WHO ISN'T IN THE DATA?', Ashish's work examines how healthcare decisions break, not at the point of failure, but long before it. In this important conversation, we set the scene for our whole series by defining the terms 'underserved' and 'under-represented', which are often used interchangeably in healthcare. Sharing real personal stories from his life and work, Ashish delves into why certain communities are consistently underserved, what that experience looks like, and how it shakes the foundations of healthcare for society at large. Ashish also shares his vision for the future and a call to action for healthcare decision-makers. Our thanks to our Conversation Partner, Unwritten Health for making this episode possible. Unwritten Health offer a patient experience data platform that can be used to generate evidence that your healthcare products work safely and equitably across the populations they serve. Note: While this conversation was developed in collaboration with Unwritten Health, Not Just Patients retained final control over the content, questions, and editorial direction of the episode.  Abbreviations GCSE - General Certificate of Secondary Education (UK) Resources The Frequency of Exclusion ReportInclusion Debt | The Compounding Cost of Skipping Patient Experience DataChapters 00:00:00 - Introductions and episode overview 00:01:59 - What makes a community underserved in healthcare? 00:07:36 - Ashish's motivations for his work in health equity 00:14:55 - How being underserved plays out across the healthcare journey 00:25:35 - Why are some communities underserved? 00:39:51 - Impact of health inequities on communities and the health system 00:45:26 - What should healthcare leaders do differently? 00:52:39 - Tough questions this series should keep asking 00:53:20 - Ashish's vision for an ideal health system Let us know what you thought of this episode Follow us or subscribe wherever you get your podcasts Website: notjustpatients.com LinkedIn: Not Just Patients Instagram: @notjustpatients Substack: https://notjustpatients.substack.com/ Have feedback or suggestions? We'd love to hear from you. Email: info@notjustpatients.com

    DEFINING Underserved Communities in Healthcare | Ashish Rishi

  4. Season 1 Trailer ·  Video

    Underserved Communities in Healthcare | A Not Just Patients Series

    📣 COMING SOON ⌛ Very excited to announce that our new podcast series on Underserved Communities in Healthcare will be reaching you soon! For this series, we are getting bigger and bolder and having tougher conversations that we can't wait to share with you. Here's a little preview, featuring our own Caitlin Rich and Clarinda Cerejo as well as a few of our series guests and partners: Ashish Rishi from Unwritten Health, Simon Stones, Benjamin AKILIMALI, Carter Hemion, Everline Konyo Mjømen, Sumaira Ahmed from The Sumaira Foundation, and Cory Inglis from BOOM! Healthcare Communications.  Watch this space and gear up to join us as we break barriers in healthcare ✊ +++ References: 1. Unwritten Health The Frequency of Exclusion, 2026. Survey of 1,204 people from underrepresented UK communities. Reported findings include 82% having felt their health concerns dismissed by a healthcare professional. 2. KFF LGBT Adults’ Experiences with Discrimination and Health Care Disparities: Findings from the KFF Survey of Racism, Discrimination, and Health. Published April 2024. Among LGBT adults who had used healthcare in the previous three years, 33% reported unfair or disrespectful treatment by a doctor or healthcare provider, versus 15% of non-LGBT adults. Let us know what you thought of this episode Follow us or subscribe wherever you get your podcasts Website: notjustpatients.com LinkedIn: Not Just Patients Instagram: @notjustpatients Substack: https://notjustpatients.substack.com/ Have feedback or suggestions? We'd love to hear from you. Email: info@notjustpatients.com

    Underserved Communities in Healthcare | A Not Just Patients Series

  5. 30 Jul

    Transforming Health Systems Through Social Participation | Dheepa Rajan

    Join us for a compelling conversation with Dr. Dheepa Rajan, who serves as a Health Systems Advisor at the European Observatory on Health Systems and Policies, as we explore what social participation means and how it can transform health policy and health system performance. Prior to joining the European Observatory, Deepa spent over 15 years at the World Health Organization (WHO) headquarters in various health system roles, covering national health planning, health system performance, participatory governance, and primary health care. She has led landmark publications including the WHO Handbook on Social Participation, the Primary Healthcare Primer, and Health System Performance Assessment: A Framework for Policy Analysis. Trained as a medical doctor, followed by acquiring advanced degrees in health economics and policy in Europe and a doctorate on traditional medicine in India, she brings a uniquely global, grounded, and systems-focused lens to the conversation. In this episode, we unpack the WHO resolution on social participation, its goals and objectives, and what it means for governments in practice. While acknowledging barriers and challenges to achieving social participation in practice, Dheepa also shares inspiring real-world examples of the value social participation can have and how it can effectively influence health policy. Note: Dheepa's reflections here draw on her time at WHO headquarters and her current work at the European Observatory. They represent her personal views and experiences and are not an official WHO or Observatory view, position, or decision. Resources and Abbreviations WHO Resolution on Social ParticipationWHO Handbook on Social ParticipationDG - Director GeneralADG - Assistant Director GeneralWHO DG DialoguesChapters 00:00:00 - Introductions and episode overview00:01:47 - Defining social participation00:03:19 - Social participation vs. patient engagement00:08:04 - Understanding the WHO Resolution on Social Participation00:15:34 - How WHO works with member states00:17:21 - Defining 'civil society' and types of civil society organisations00:20:46 - Dheepa's journey into health system governance and social participation00:25:37 - Benefits of social participation00:28:58 - Case study of successful social participation in practice00:33:05 - Barriers to social participation00:42:58 - Dheepa's long-term dream for social participation00:45:01 - Advice for stakeholders to engage with civil society better00:46:16 - Advice for patient advocates and citizens to get involved in health policy00:49:26 - Reflections with Caitlin and ClarindaLet us know what you thought of this episode Follow us or subscribe wherever you get your podcasts Website: notjustpatients.com LinkedIn: Not Just Patients Instagram: @notjustpatients Substack: https://notjustpatients.substack.com/ Have feedback or suggestions? We'd love to hear from you. Email: info@notjustpatients.com

    Transforming Health Systems Through Social Participation | Dheepa Rajan

  6. 29 Jun

    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. Note: The example Clarinda shared about a patient on psychiatric medication was inspired by a LinkedIn post from a Patient Safety Expert 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 SchemeLet us know what you thought of this episode Follow us or subscribe wherever you get your podcasts Website: notjustpatients.com LinkedIn: Not Just Patients Instagram: @notjustpatients Substack: https://notjustpatients.substack.com/ Have feedback or suggestions? We'd love to hear from you. Email: info@notjustpatients.com

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

  7. 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 Let us know what you thought of this episode Follow us or subscribe wherever you get your podcasts Website: notjustpatients.com LinkedIn: Not Just Patients Instagram: @notjustpatients Substack: https://notjustpatients.substack.com/ Have feedback or suggestions? We'd love to hear from you. Email: info@notjustpatients.com

    Creating Space for Patients in Medical Publishing | Emma Doble

  8. 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 OBELet us know what you thought of this episode Follow us or subscribe wherever you get your podcasts Website: notjustpatients.com LinkedIn: Not Just Patients Instagram: @notjustpatients Substack: https://notjustpatients.substack.com/ Have feedback or suggestions? We'd love to hear from you. Email: info@notjustpatients.com

    Empowering Patients through Access to Medical Records | Richard Fitton
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About

Hi! We’re Caitlin Rich and Clarinda Cerejo, Co-Hosts of Not Just Patients, a global podcast that aims to bring stakeholders together and break barriers to meaningful patient involvement in healthcare.We both live with rare diseases, are EUPATI Fellows, and work in healthcare research and communications. Over the past two and a half years, we have hosted in-depth conversations with a range of healthcare stakeholders to examine how healthcare can become more inclusive, collaborative, and effective.We were recently interviewed by the World Medical Journal, won the Acquisition International Non-Profit Organisation Award for Excellence in Driving Patient Engagement 2025, and were named Patient Advocacy Podcast of the Year in the Corporate LiveWire Awards 2025/2026.Our guests are patient advocates, healthcare professionals, industry representatives, and other stakeholders who interact with the health system at large. Each of our guests brings in a unique perspective on patient engagement and shares stories of initiatives they’ve championed or been involved in.We will soon be launching a special series on Underserved Communities in Healthcare. The series will explore what meaningful patient involvement looks like for communities that healthcare systems too often fail to adequately see, hear, or design for. This includes children and young patients, disabled and neurodivergent people, LGBTQIA+ communities, racial and ethnic minorities, and people from lower- to middle-income countries. 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
    33
  • Rating
    Clean
  • Copyright
    © 2026 Not Just Patients
  • Show Website
    Not Just Patients