Not Just Patients

Welcome to another episode of Not Just Patients, part of our series on Underserved Communities in Healthcare. In this episode, Caitlin and Clarinda are joined by Mario Estevez and Everline Konyo Mjømen to discuss the experiences of racial and ethnic minorities in healthcare.

Mario Estevez is an organiser and trainer with the Racial Equity Institute and the California Anti-Racism Alliance. A first-generation Afro-Dominican American and former award-winning history teacher, Mario became a rare disease advocate after his son was diagnosed with Hunter syndrome. He has served as Vice President of Project Alive, has helped fund gene therapy research, expand Florida’s newborn screening, and secure donated treatment for patients in Latin America. He serves on the BRIDGES community advisory board, which studies whole-genome sequencing in newborn screening. 

Born and raised in Kenya and now living in Norway, Everline is a EUPATI Fellow and nurse and brings personal and professional experience of navigating life as an immigrant and minority in the Norwegian healthcare system. Everline is committed to amplifying the voices of minorities and people with immigrant backgrounds through involvement in patient panels, the Health Cluster, clinical ethics committee, the Norwegian Ministry of Health’s Contact Forum, and the Immigrant Council. 

In this important conversation, we define racial and ethnic minorities, explore systemic factors that contribute to inequitable care, and discuss what meaningful inclusion requires.

Our thanks to our Episode Supporter, BOOM! Healthcare Communications, for making this conversation possible.

Note: BOOM! Healthcare Communications provided financial support but was not involved in any of the content, editorial, or production-related decisions for this episode. Caitlin is employed by BOOM! Healthcare Communications.

Chapters

Resources and abbreviations

• Racial Equity Institute
• California Anti-Racism Alliance
• EUPATI -  European Patients' Academy on Therapeutic Innovation
• MPS II - Mucopolysaccharidosis type II, also known as Hunter syndrome
• GP - General practitioner
• NGO - Non-governmental organisation
• US Census Bureau
• Global Genes
• Publication: Medicine’s Privileged Gatekeepers: Producing Harmful Ignorance about Racism and Health
• National Minority Quality Forum
• NIH - National Institutes of Health, US
• CDC - Centers for Disease Control and Prevention, US
• FDA - Food and Drug Administration, US

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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. Clarinda is an India Ambassador for The Sumaira Foundation.

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 Congo
• National Policy for Rare Disease in India

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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 community
• How stigma, culture, and the political situation in many countries can make honest conversations with clinicians feel unsafe
• What safe and inclusive care can look like and positive initiatives that are driving change globally

This 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 Disorders
• Rare Disease Diversity Coalition (RDCC) 
• National Organization for Rare Disorders (NORD)
• FDA Accelerated Approval Pathway
• Accelerated Approval program from The RARE Foundation (formerly EveryLife Foundation for Rare Diseases)
• World Professional Association on Transgender Health
• LGBTQ+ Health Disparities
• Addressing inequalities in LGBT cancer screening coverage
• Do cancer screening rates differ across sexual orientation and gender identity?
• Advocates for Trans Equality health and healthcare
• The Trevor Project
• ILGA (International Lesbian, Gay, Bisexual, Trans and Intersex Association) World Database
• UK Equality Act 2010
• NHS England LGBT+ Health Evidence Review
• LGBT - Healthy People 2030
• Sex and Gender Equity in Researcher (SAGER) guidelines
• Simon's review project exploring sexual health, pleasure, justice, and wellbeing in rheumatology
• Terrence Higgins Trust
• DSM - Diagnostic and Statistical Manual of Mental Disorders 

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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 Report
• Inclusion Debt | The Compounding Cost of Skipping Patient Experience Data

Chapters

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

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📣 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

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Website: notjustpatients.com
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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 Participation
• WHO Handbook on Social Participation
• DG - Director General
• ADG - Assistant Director General
• WHO DG Dialogues

Chapters

• 00:00:00 - Introductions and episode overview
• 00:01:47 - Defining social participation
• 00:03:19 - Social participation vs. patient engagement
• 00:08:04 - Understanding the WHO Resolution on Social Participation
• 00:15:34 - How WHO works with member states
• 00:17:21 - Defining 'civil society' and types of civil society organisations
• 00:20:46 - Dheepa's journey into health system governance and social participation
• 00:25:37 - Benefits of social participation
• 00:28:58 - Case study of successful social participation in practice
• 00:33:05 - Barriers to social participation
• 00:42:58 - Dheepa's long-term dream for social participation
• 00:45:01 - Advice for stakeholders to engage with civil society better
• 00:46:16 - Advice for patient advocates and citizens to get involved in health policy
• 00:49:26 - Reflections with Caitlin and Clarinda

Let us know what you thought of this episode

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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 overview
• 1:07 - Stacy’s story - diagnostic and surgical errors
• 5:26 - Defining patient safety and adverse events
• 11:38 - Barriers to reporting adverse events
• 14:15 - Patient safety in the drug development process
• 17:11 - Patient involvement to improve trial safety
• 20:40 - Patient safety monitoring in medical practice
• 25:57 - Adverse event reporting by pharmaceutical companies
• 29:28 - Collaborating to improve patient safety
• 33:19 - Informed consent and patient education materials
• 36:59 - Empowering patients to report symptoms and side effects
• 42:36 - A call to action
• 49:19 - Stacy's long-term dream for patient safety
• 52:41 - Reflections with Caitlin and Clarinda

Resources and abbreviations:

• SIDM -  Society to Improve Diagnosis in Medicine (no longer functional)
• 21st Century Cures Act
• AMA – American Medical Association
• ICU - Intensive Care Unit
• GLP‑1 - Glucagon‑Like Peptide‑1 (therapies often used for weight loss)
• CRO - Contract Research Organisation
• APAC - Asia‑Pacific region
• HTA - Health Technology Assessment
• PROMS - Patient‑Reported Outcome Measures
• PREMS - Patient‑Reported Experience Measures
• HCPs - Healthcare professionals
• EUPATI - European Patients Academy on Therapeutic Innovation
• Tufts Clinical and Translational Science Institute
• Scripps Research Digital Trials Center
• MHRA -  Medicines and Healthcare products Regulatory Agency
• MHRA Yellow Card Scheme

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Website: notjustpatients.com
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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 homepage
• Patient Engagement Open Forum (PEOF) 
• Caitlin and Clarinda's featured interview in the World Medical Journal
• BMJ What Your Patient Is Thinking Series
• Emma's original article in the What Your Patient is Thinking Series
• ICMJE  (International Committee of Medical Journal Editors) authorship criteria
• The BMJ patient and public reviewer sign up
• Journal of Patient Experience
• Journal of Patient Centricity [Disclosure: Clarinda is on the Editorial Board]
• Cochrane

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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 overview
• 00:03:21 -  Defining electronic health records
• 00:12:06 - Richard's journey with health records
• 00:22:11 - The Harold Shipman serial killer case
• 00:26:36 - Sharing records with patients
• 00:32:28 - Barriers and global disparities
• 00:36:25 - Driving global adoption
• 00:42:59 - Initiatives to overcome barriers
• 00:50:22 - Advice for clinicians
• 00:53:28 - Reflections with Caitlin and Clarinda

Resources and abbreviations:

• 8th Patient Right of the WHO Patient Safety Charter
• Lawrence Weed Problem-Oriented Medical Record
• Black Report
• Acheson Report
• Harold Shipman case
• Department of Health Copying Letters to Patients working group
• NHS – National Health Service (UK)
• GP – General Practitioner
• EHR / EHRs – Electronic Health Record(s)
• GMC – General Medical Council (UK)
• WHO – World Health Organization
• ICD – International Classification of Diseases (referenced via “Reed codes from ICD and SNOMED”)
• SNOMED – Systematized Nomenclature of Medicine – Clinical Terms
• WMJ - World Medical Journal
• NICE - National Institute of Clinical Excellence 
• Prior episode with rare disease advocate Emily Reuben OBE

Let us know what you thought of this episode

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Website: notjustpatients.com
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Email: [email protected]

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 Healthcare
• National Health Council Fair-Market Value Calculator
• ICHOM Patient Partner Alliance
• Swiss Government National Quality Strategy for Healthcare
• NHS - National Health Service, UK
• CMS - Centers for Medicare and Medicaid Services, US

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Website: notjustpatients.com
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Instagram: @notjustpatients
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Email: [email protected]