Not Just Patients

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

Tue, 06 Oct 2026 17:00:00 +0530

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

Let us know what you thought of this episode

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DEFINING Underserved Communities in Healthcare | Ashish Rishi

Mon, 21 Sep 2026 16:00:00 +0530

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

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

Underserved Communities in Healthcare | A Not Just Patients Series

Wed, 02 Sep 2026 16:00:00 +0530

📣 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

Transforming Health Systems Through Social Participation | Dheepa Rajan

Thu, 30 Jul 2026 20:00:00 +0530

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

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

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

Mon, 29 Jun 2026 12:00:00 +0530

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

Let us know what you thought of this episode

Creating Space for Patients in Medical Publishing | Emma Doble

Tue, 26 May 2026 03:00:00 +0530

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

Let us know what you thought of this episode

Empowering Patients through Access to Medical Records | Richard Fitton

Tue, 28 Apr 2026 20:00:00 +0530

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

Developing Patient-Centred Outcomes Measures | Jennifer Bright

Mon, 30 Mar 2026 11:00:00 +0530

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:

Let us know what you thought of this episode

Advancing Rare Disease Care through Patient Advocacy | Emily Reuben OBE

Thu, 26 Feb 2026 13:00:00 +0530

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 – Introductions
01:40 – Emily's story
13:00 – Starting a rare patient advocacy group
16:55 – Challenges in rare disease care
20:12 – Role of advocacy in advancing rare disease care
27:35 – Getting into the right rooms (and feeling welcome)
30:34 – Redefining standards of care
35:55 – Overcoming reimbursement challenges (Project Hercules)
49:52 – Emily's long‑term dream for rare disease care
50:34 – Advice to rare disease advocates and healthcare stakeholders
54:01 – Reflections with Caitlin and Clarinda

Resources & abbreviations

Let us know what you thought of this episode

Galvanising Multistakeholder Collaboration for Meaningful Change | Derick Mitchell

Mon, 26 Jan 2026 18:00:00 +0530

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 overview
2:00 - Derick's journey into patient engagement
6:04 - Challenges with embedding patient voices
12:46 - Defining value for different stakeholders
17:09 - Ensuring representation and diversity
26:45 - Rewards and incentives for collaboration
28:46 - Real-world examples
33:22 - Evolution of collaborative patient engagement
37:00 - Why collaboration matters for healthcare transformation
44:44 - Barriers to multistakeholder collaboration
50:13 - Advice for driving collaboration
58:44 - Reflections with Caitlin and Clarinda

Resources & abbreviations

AI – Artificial Intelligence
CTTI – Clinical Trials Transformation Initiative
HTA – Health Technology Assessment
IHI – Innovative Health Initiative
IPPOSI – Irish Platform for Patient Organisations, Science, and Industry
Irish Rare Disease Plan
Patient Engagement Management Suite
PFMD – Patient Focused Medicines Development
PPI Ignite
The Synergist
PCORI – Patient-Centered Outcomes Research Institute
PEOF – Patient Engagement Open Forum

Let us know what you thought of this episode

Reflections on 2025, Hopes for 2026 | The Community Speaks

Tue, 16 Dec 2025 03:00:00 +0530

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 goals
Connie 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 entities
Dr 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 Project
Keith 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 confidence

Let us know what you thought of this episode

Co-Creating HealthTech Solutions | Cécile Tardy-Srinivasan

Mon, 24 Nov 2025 18:00:00 +0530

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 overview
1:52 - Defining health tech
8:42 - Cécile's story and journey into innovation
11:34 - The evolution and challenges of health tech
19:42 - The DayOne Accelerator Programme
25:52 - Patient involvement in health tech
37:04 - Cecile’s vision for the future of health tech
40:04 - Advice for health tech innovators and patients
45:08 - Reflections with Caitlin and Clarinda

Resources and Abbreviations

DayOne Accelerator
IBDrelief
Ancora - Find Cancer Clinical Trials
Trial Hub
EUPATI – European Patients’ Academy on Therapeutic Innovation
FDA – Food and Drug Administration (USA)
PFMD – Patients Focused Medicines Development
CRO – Contract Research Organization
R&D – Research and Development
HTA – Health Technology Assessment
AI – Artificial Intelligence

Let us know what you thought of this episode

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

Wed, 15 Oct 2025 13:00:00 +0530

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

Let us know what you thought of this episode

Raising Public Awareness through Multi-Channel Advocacy | Trishna Bharadia

Wed, 24 Sep 2025 23:00:00 +0530

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 - Introductions
00:01:46 - Trishna's journey into advocacy
00:08:02 - Importance of raising awareness
00:13:43 - Exploring different advocacy channels
00:21:05 - Strictly Come Dancing experience
00:30:05 - Normalising disability/chronic illness in mass media
00:33:36 - Caregiver/family involvement in advocacy
00:38:59 - Countering cultural and societal stigma
00:43:42 - Advice for other patient advocates
00:51:10 - Reflections with Caitlin and Clarinda

Resources and Abbreviations

MS - multiple sclerosis
MS Society
Asian MS
MS Society Stop MS Appeal
ISPEP -International Society for Patient Engagement Professionals
Patient Information Forum (PIF)
NMO - neuromyelitis optica spectrum disorder

Let us know what you thought of this episode

Building Empathy by Understanding Patient Experience | Mark Doyle

Thu, 28 Aug 2025 09:00:00 +0530

Join us for a thought-provoking conversation with Mark Doyle, as we explore the vital role of empathy in healthcare and how truly understanding the patient experience can drive better outcomes for patients, professionals, and organisations alike.

Mark Doyle is the founder of the award-winning, immersive patient experience company A Life in a Day. He began his professional life as an actor and has spent the past 20 years applying his creative expertise to develop innovative learning programs. A Life in a Day is a unique, 24-hour simulation that provides participants the opportunity to walk in the shoes of a person living with a specific condition or illness, revealing the profound impact it could have on their own physical, social, and emotional wellbeing.

In this episode, we dive into the challenges of embedding empathy at an organisational level, the importance of understanding the patient experience holistically, and the power of storytelling in driving meaningful change. Mark also offers practical advice for healthcare stakeholders and patients alike, and shares his vision for a future where empathy is at the heart of every healthcare journey.

Chapters:

00:00:00 - Introductions
00:01:31 - The importance of empathy in healthcare
00:11:20 - Defining the holistic patient experience
00:20:49 - Mark’s journey from acting to healthcare
00:25:14 - The power of patient storytelling
00:27:50 - Experiencing ‘A Life in a Day’ of a patient
00:36:10 - Understanding the impact on carers and families
00:42:28 - Co-creating simulations with patients and families
00:45:00 - Initiatives driving empathy in healthcare
00:48:38 - Mark’s long-term dream for empathy in healthcare
00:50:03 - Advice for embedding empathy in healthcare
00:52:56 - Reflections with Caitlin and Clarinda

Resources & abbreviations

AI – Artificial Intelligence
A Life in a Day
Dementia Bus
HTA – Health Technology Assessment
MS – Multiple Sclerosis
RSV – Respiratory Syncytial Virus
VR – Virtual Reality

Let us know what you thought of this episode

Equipping Patients for Shared Decision-Making | Estelle Jobson

Wed, 23 Jul 2025 12:00:00 +0530

Join us for an empowering conversation with Estelle Jobson, EUPATI Fellow and patient expert living with endometriosis, about equipping patients for shared decision-making.

Estelle is a founding patient partner at Geneva University Hospitals (HUG) programme, PartnerREC, and a seasoned communications professional with an MSc in Publishing from NYU. With decades of experience supporting patient-centric research and serving as a patient reviewer for the British Medical Journal, Estelle brings a unique perspective on navigating the healthcare system and empowering patients to take charge of their medical journeys.

In this episode, we dive deep into the concept of shared decision-making—what it really means for patients and providers, why it is so rare, and how it can transform healthcare outcomes. Estelle shares her personal story, highlights the barriers patients face, and introduces practical tools to help patients get the most out of their medical consultations.

Chapters:

00:00:00 - Introductions
00:01:27 - Defining shared decision-making
00:08:35 - Estelle's story and motivations
00:15:47 - Importance of patient choice
00:20:21 - Barriers to shared decision-making
00:27:03 - Tools that aid shared decision-making
00:42:56 - A collaborative approach to lifestyle changes
00:46:55 - Estelle's dream for patient care
00:51:35 - Estelle's advice for patients and stakeholders
00:55:24 - Reflections with Caitlin and Clarinda

Resources and abbreviations:

Let us know what you thought of this episode

Shaping Health Policy with Patient Input | Urvashi Prasad

Sun, 29 Jun 2025 16:00:00 +0530

Join us for this inspiring conversation with Urvashi Prasad as we discuss how patients can be involved in shaping healthcare policy.

Urvashi was a Director in the Office of the Vice Chairman at NITI Aayog, the Government of India's premier policy think tank, and co-authored India's first Voluntary National Review on Sustainable Development. She also contributed to the management of the Covid-19 pandemic in India, the implementation and monitoring of the Sustainable Development Goals, and the promotion of gender equality and social inclusion. With extensive experience and over 100 publications in public health and policy, she is passionate about improving the lives and well-being of people, especially the underserved and marginalized. Urvashi has been living with Stage IV ALK-positive lung cancer since 2022.

This episode explores what health policy is and how it is developed, advice on how patients can influence and leverage policy, and real-world examples of how this has been done.

Resources & abbreviations:

ALK - Anaplastic lymphoma kinase
EUPATI
NGO - Non-governmental organisation
Policy Brief on Alternative Financing for Cancer Care in India

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Professionalising Patient Engagement┃Emma Sutcliffe

Tue, 27 May 2025 12:00:00 +0530

This episode of Not Just Patients is all about the need for viewing patient engagement as a professional practice integral to healthcare, rather than just passion work.

Our expert guest today is Emma Sutcliffe, Chief Patient Officer at the International Society for Patient Engagement Professionals (ISPEP). Emma is one of the most cited and published experts in the field of patient engagement and patient sciences, with her most recent industry role as the Global Patient Officer at Ipsen. In 2024, Emma founded ISPEP -- the International Society for Patient Engagement Professionals -- which became the biggest organisation to align and elevate patient engagement practices in the sector. Her scientific pedigree is as a Medical Biochemist and she recently added to her clinical skill set by qualifying as a psychotherapist and counsellor. Emma also holds several board trustee positions with rare disease patient organisations.

Join us as we explore what it means to be a patient engagement professional (PEP), the movement towards professionalising patient engagement, career development for PEPs, and the power of professional communities.

Chapters

00:00:00 - Introductions

00:01:25 - Emma's journey into patient engagement

00:05:22 - Defining patient engagement

00:08:40 - Role of a Chief Patient Officer

00:12:45 - Careers in patient engagement

00:16:25 - The movement towards professionalising patient engagement

00:23:17 - The debate about lived experience

00:31:44 - Qualities of a patient engagement professional (PEP)

00:37:45 - Challenges PEPs face

00:41:55 - Training and career development

00:45:20 - Advice for patient advocates

00:49:50 - Reflections with Caitlin and Clarinda

Resources and abbreviations

ISPEP – International Society for Patient Engagement Professionals
ELT – Executive leadership team
CPO – Chief Patient Officer
SOP – standard operating procedure
FMV – fair market value
KCL – King's College London
PFMD – Patient Focused Medicines Development
EUPATI - European Patients' Academy on Therapeutic Innovation
PEP - patient engagement professional
PEP Talks series by ISPEP

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A Year in Review┃LIVE TAKEOVER with Joel Nelson

Mon, 14 Apr 2025 16:00:00 +0530

In celebration of our First Anniversary at Not Just Patients, we hosted a very special LinkedIn LIVE Podcast Takeover with Guest Host Joel Nelson on World Health Day, the 7th of April 2025.

An award-winning patient advocate who uses his story of psoriatic-associated juvenile idiopathic arthritis to inspire change, Joel is the Founder of Psoriatic Disease UK. He also hosts The Joel Nelson Podcast and The Chronic Pain Club Talk Show, where he facilitates conversations to help build a global community of peer support and awareness for patients and carers dealing with chronic conditions.

The live conversation had Joel put our hosts Caitlin and Clarinda in the hot seat and ask them tough and fun questions about themselves and the year that has been.

This conversation, published here without any edits, offers warm laughs and camaraderie and an insider view into what goes into running Not Just Patients, working together effectively, and our vision for the year ahead.

Chapters:

00:00:00 - Introductions
00:05:32 - Podcast origin, vision, and objectives
00:11:26 - Achievements and favourite things
00:17:20 - Challenges and lessons learned
00:26:12 - Working together effectively
00:36:35 - Looking to the future
00:41:13 - Quick fire and wrap up

Let us know what you thought of this episode

Balancing Professional Life and Chronic Illness┃Lilly Stairs

Tue, 25 Mar 2025 14:00:00 +0530

On this episode, we talk to Lilly Stairs about thriving in your career and managing your health while living with a chronic illness.

Lilly Stairs is an internationally recognized patient advocate, serial entrepreneur, philanthropist, and sought after speaker. Her purpose was ignited in a hospital bed after being diagnosed with multiple autoimmune diseases. She is the Founder of Patient Authentic, a boutique consultancy that helps healthcare organizations build events and experiences for patient advocates, and the Chronic Boss Collective, a networking membership for ambitious business women living with chronic conditions.

Join us as we talk about the challenges of navigating professional life for people living with chronic illness, the value they can bring with their 'secret sauce', and how employers can cultivate a more inclusive and supportive environment that allows people living with chronic illnesses to thrive in their careers.

Chapters:

0:00 - Introductions
1:40 - Lilly's personal story
7:46 - Career motivations for people with chronic illness
12:19 - Challenges to thriving in professional life
18:09 - Challenges for patient advocates
24:54 - Perceived challenges for employers
27:53 - Examples of workplace accommodations
29:35 - Benefits of employing people with chronic illness
35:39 - Career-focused initiatives for people with chronic illness
40:33 - Initiatives for employers to support employees better
46:51 - Advice for thriving in career while prioritising health
48:47 - Advice for employers
50:09 - Reflections with Caitlin and Clarinda

Resources mentioned:

Autoimmune Association
BCG (Boston Consulting Group) study on workplace accommodations for employees with disabilities
Career and Chronic Illness by Michelle Irving
Making Space by Keely Cat-Wells
Chronically Capable
Disability:IN
Disclo
Global Patient Advocacy Coalition for Headache initiative on Migraine Fitness at Work
Journal publication on unprecedented productivity gains achieved through a migraine awareness program at the Japanese information technology company Fujitsu

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Bolstering Rare Disease Research through Collaboration┃Jo Balfour

Thu, 27 Feb 2025 12:00:00 +0530

Join us for this special Rare Disease Day episode of Not Just Patients, where we speak with Jo Balfour, Managing Director and Co-founder of Cambridge Rare Disease Network (CamRARE), about research in rare disease.

Jo is the driving force behind the CamRare's innovative events program, designed to raise awareness about rare diseases and encourage cross-sector collaboration. She manages the organisation's Companies Forum, a networking and knowledge-sharing platform for pharma, biotech, and life science companies, and oversees all other aspects of the charity's research and project work. Additionally, Jo founded the charity's regional rare disease community, Unique Feet, bringing families together in an inclusive and supportive environment.

Listen to this insightful conversation where we discuss the unique challenges faced by people living with rare disease, overcoming barriers to rare disease research, and the value of collaboration between researchers and rare disease patient organisations.

Chapters

0:00 - Introductions
1:30 - Jo's journey into rare disease advocacy
7:07 - Challenges of living with a rare disease
11:34 - Challenges to rare disease research
15:58 - The numbers game and need for data
21:29 - Collaborating with patient organisations
28:10 - Navigating the rare disease advocacy landscape
40:12 - Initiatives supporting collaborative research
47:47 - Jo's dream for rare disease research
50:53 - Advice for researchers
51:14 - Advice for patient communities
53:50 - Reflections with Caitlin and Clarinda

Resources and abbreviations mentioned:

Let us know what you thought of this episode

Designing Patient-Aligned Clinical Trials┃Maya Zlatanova

Mon, 27 Jan 2025 15:00:00 +0530

Join us for an insightful conversation with Maya Zlatanova, CEO and Co-founder of FindMeCure and TrialHub, as we discuss patient-aligned clinical trials that consider both scientific rigour and patient needs.

Maya is a health-tech entrepreneur and pharma industry speaker with over 15 years of experience in feasibility, operations, and patient recruitment and engagement. Guided by her strong sense of empathy and love of storytelling, Maya champions patient-aligned trial design and is passionate about improving the way clinical research is conducted.

This episode highlights the barriers patients face in accessing trials, the importance of awareness and education, and the benefits of improving clinical trial design to enhance patient experiences.

Resources and abbreviations mentioned:

Let us know what you thought of this episode

[LIVE] The Advocacy Life | Danielle Drachmann and Sumaira Ahmed

Mon, 16 Dec 2024 17:00:00 +0530

Join us for this special (unedited) recording of Not Just Patients, which was streamed LIVE on LinkedIn!

To celebrate our 10th episode, we were joined by two incredibly inspiring advocates, Danielle Drachmann and Sumaira Ahmed. Listen to this uplifting, raw, and real conversation as these two amazing women share how they turned their adversity into advocacy, and the unspoken realities of their deeply personal work.

About our guests:

Danielle Drachmann is a recipient of the 2022 Young Patient Advocate Award at the Black Pearl Awards, and Executive Director at Ketotic Hypoglycemia International. As a rare disease patient and mother of three children with a rare disease, she is deeply passionate about patient engagement, partnering, citizen science, and patient-driven research. At Evidera, part of Thermo Fisher Scientific, Danielle specialises in fostering multi-stakeholder relationships and advancing patient-centred research. Additionally, she contributes to various health committees and has helped shape Europe's rare disease policy through her work with EURORDIS.

Sumaira Ahmed was diagnosed with seronegative neuromyelitis optica spectrum disorder (NMOSD) in the summer of 2014, after experiencing sudden and severe vision loss and weakness/numbness. Less than two months after her diagnosis, she founded The Sumaira Foundation (TSF) dedicated to generating global awareness of NMOSD, MOGAD and other rare neuroimmune conditions, building communities of support for patients and their loved ones, supporting research and advocating on behalf of patients. Sumaira currently serves as the Executive Director of The Sumaira Foundation.

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Advancing Equity, Diversity, and Inclusion in Healthcare┃Prof. Lara Bloom

Tue, 26 Nov 2024 14:00:00 +0530

Join us for a compelling conversation with Professor Lara Bloom, President and CEO of the Ehlers-Danlos Society. A strong patient advocate, Lara has a passion for pushing boundaries and fighting for progression DE&I in healthcare and LGBTQIA+ rights.

Throughout our discussion, we dissect the complex relationship between health equity and inclusion on a global scale. The episode also explores the transformative power of patient engagement in achieving health equity, emphasising the importance of true representation and inclusion.

Chapters
00:00:00 - Introductions
00:01:20 - Lara's journey into advocacy
00:04:16 - State of DEI in healthcare
00:10:45 - Challenges viewed through a global lens
00:15:00 - Interplay between health equity and diversity & inclusion
00:17:40 - Understanding diverse communities and minorities
00:24:05 - Need for better representation in healthcare
00:29:09 - Evolution of DEI in healthcare
00:35:13 - Initiatives working to further DEI in healthcare
00:37:18 - Understanding privilege in the context of healthcare
00:40:42 - Mindset for overcoming challenges
00:44:03 - Future and advice for healthcare stakeholders
00:47:00 - Advice for patients and patient advocates
00:48:56 - Power of patient organisations
00:54:53 - Reflections with Caitlin and Clarinda

Resources and abbreviations

Ehlers-Danlos Support Group (EDS UK)
EDS - Ehlers-Danlos Society
EDNF - Ehlers-Danlos National Foundation, US
HSD – hypermobility spectrum disorders
DEI - diversity, equity, and inclusion
NHS - National Health Service, UK
Global Genes conference
CF – cystic fibrosis
ESG – environmental, social, and governance
World Health Assembly
Global Patient Movement Catalyst
EDS Road to 2026
World Health Summit

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Demystifying Regulatory Affairs and HTA┃Anke-Peggy Holtorf

Wed, 23 Oct 2024 15:00:00 +0530

On this episode, Dr. Anke-Peggy Holtorf joins us to help demystify the complex processes of regulatory affairs and health technology assessment (HTA) and explain the crucial role of patients in these processes.

Anke acts as Secretary of the Board at Health Technology Assessment international and is a Steering Committee member and project coordinator for the Patient and Citizen Involvement in HTA Interest Group. She is co-editor of the 2nd edition of the book on Patient Involvement in HTA, which will be published in 2025. Anke has also taught graduate courses in International Health Policy, HTA, and the role of patient involvement.

Anke's global experience and depth of knowledge spanning decades shine through as she simplifies some highly technical and complex concepts for our listeners.

Chapters:
0:00 - Introductions
1:34 - Overview of regulatory affairs and HTA
6:48 - The regulatory approval process
12:09 - Patient involvement in regulatory affairs
22:19 - Overcoming barriers to patient involvement
27:32 - Regulatory success rates
30:30 - The HTA process
32:32 - Differences in healthcare models
36:46 - Factors evaluated in HTA
43:45 - Patient involvement in HTA
54:32 - Advice for patients and stakeholders
59:08 - Reflections with Caitlin and Clarinda

Resources and definitions:

HTA - Health Technology Assessment
Reimbursement: the process by which healthcare providers are compensated/paid back for the medical services they provide, either by the government or through insurance
Out-of-pocket costs: when patients pay for their own medical costs
FDA - US Food and Drug Administration
EMA - European Medicines Agency
Chinese FDA
QALY - Quality adjusted life years
WHO - World Health Organization
NICE - National Institute for Health and Care Excellence, UK
CF Trust - Cystic Fibrosis Trust
EUPATI - European Patients' Academy on Therapeutic Innovation
EUCAPA - European Capacity Building for Patients
Anke's report on Patient Involvement in HTA in Europe - full report and short version

Let us know what you thought of this episode

Navigating Digital Health and Health Data┃Mark Duman

Wed, 25 Sep 2024 14:00:00 +0530

On this episode, we speak to Mark Duman, Chief Patient Officer at MD Healthcare, about digital health and health data, how digital therapeutics get developed and approved, and how challenges around access and equity can be navigated.

Mark is a clinician, management consultant, and patient advocate who works with several healthcare organisations to harness digital health, improve market access, and embed patient engagement in healthcare products and services.

Join us for this insightful conversation on a hot and rapidly evolving topic.

Chapters
0:00 - Introductions
1:47 - Mark's story
3:46 - Scope of digital health and health data
6:11 - Enhancing patient care
12:15 - Patient engagement
14:44 - Regulations and reimbursement
21:59 - Challenges around access and equity
28:55 - Development process and patient inclusion
37:35 - Data privacy and ethics
47:18 - Future of digital health
52:57 - Advice for patients/stakeholders
56:39 - Reflections with Caitlin and Clarinda

Resources/abbreviations

Cerner system for electronic health records
QALY – quality-adjusted life years
WALY – wellbeing-adjusted life years
Salford Lung Study
PREMS – patient-reported experience measures
PROMS – patient-reported outcomes measures
ABPI - Association of the British Pharmaceutical Industry
ABHI - Association of British HealthTech Industries
EUPATI Patient Engagement Roadmap
DTA - Digital Therapeutics Alliance
DIME – Digital Medicine Society
NICE – National Institute for Health and Care Excellence, UK
Sleepio
Nesta report
CE Mark
DTAC – Digital Technology Assessment Criteria
DTS (data security and protection) toolkit
Scotland’s Patient Experience Programme
Flatiron Health Patient Voices Panel
GDPR - General Data Protection Regulation
Information Governance Toolkits
HMO - health maintenance organization
ZOE Study
Lloyd’s Bank Consumer Digital Index
Patient Innovation

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Medical Publications: From Access to Patient Authorship┃Avishek Pal

Thu, 29 Aug 2024 11:00:00 +0530

On this episode, we speak to Avishek Pal about how patients can better access and contribute to medical publications.

In parallel to his day job as Global Medical Director of Cell & Gene Therapy at Novartis, Avishek is affiliated with the Institute for Biomedical Ethics at University of Basel, investigating how medical research information in plain language may improve health literacy and autonomy in patients with chronic diseases.

Join us as we discuss how patients seek medical information, the role of generative AI, and initiatives fostering better patient access and involvement in medical literature.

Chapters:

0:00 - Introductions
1:48 - Patients' information-seeking patterns
4:38 - Role of health literacy
6:21 - Importance of accessing medical literature
8:44 - Information overload & reliability
15:24 - Plain-language summaries
26:43 - Publication bias in medical research
30:54 - AI for medical information
39:25 - Patients as authors
49:53 - Future of medical publications
53:15 - Advice for different stakeholders
56:44 - Reflections with Caitlin & Clarinda

Resources and abbreviations:

Let us know what you thought of this episode

Embracing Shared Decision-Making in Patient Care┃Dr. Victor Montori

Tue, 23 Jul 2024 12:00:00 +0530

In this episode, we speak to Dr. Victor Montori about the importance of shared decision-making in healthcare.

Dr. Montori is the Robert H. and Susan M. Rewoldt Professor of Medicine at Mayo Clinic. An endocrinologist, health services researcher, and care activist, he is the author of more than 750 peer-reviewed publications and is among the most cited researchers in clinical medicine and in social science. He is a recognized expert in evidence-based medicine, shared decision making, and minimally disruptive medicine. He is also the author of the book Why We Revolt, and is leading a movement, a Patient Revolution, for Careful and Kind Care for all.

In our conversation, we discuss the need for patient-centred care that involves and respects individuals as holistic beings, the challenges that inhibit shared decision-making in practice, and the broader societal need to foster self-care and community support.

Chapters
0:00 - Introductions
1:40 - What is shared decision-making?
5:30 - Careful and kind care
9:24 - Forms of shared decision-making
14:58 - Victor's motivation
18:50 - How much time should doctors spend?
23:20 - Is shared decision-making for all patients?
27:15 - Who is responsible for shared decision-making?
31:28 - Where can clinicians learn shared decision-making?
35:46 - A Patient Revolution
44:25 - Barriers to overcome
50:08 - Tackling an insurmountable challenge
55:43 - Reflections with Caitlin & Clarinda

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Embedding Patient Perspectives into Clinical Research┃Robert Joyce

Mon, 24 Jun 2024 10:00:00 +0530

On this episode, we talk to Robert Joyce about the critical role of patient involvement in clinical research and the various ways in which patients can bring rich perspectives to the research and development process.

Robert has lived with chronic illness all his life, but following a traffic accident in 2014, he was left with debilitating symptoms. No longer able to work, Robert started his blog, a 30 minute life, to share his experiences, and also has a podcast of the same name.

In 2019, Robert also became involved in clinical research, eventually earning the title of Embedded Patient Researcher and becoming a co-applicant on the trial of a therapy for Multiple Sclerosis. Unfortunately he was not permitted to continue in this role, but is now an advocate for more patients to be involved in research.

Chapters:

0:00 - Introductions

1:25 - Role of an embedded patient researcher

8:10 - Benefits of patient involvement in research

15:56 - Different ways patients can be involved in research

23:08 - Role of country/disease-specific patient organisations

25:08 - Challenges and initiatives for rare diseases

27:37 - Initiatives to bring patients closer to research

29:10 - Robert's story and personal challenges

33:55 - Challenges to patient involvement

35:44 - What needs to be done to overcome barriers

44:22 - Engaging funders in patient involvement

51:30 - Advice for patients looking to get involved

53:01 - Advice for stakeholders looking to involve patients

55:38 - Reflections with Caitlin and Clarinda

Resources and abbreviations mentioned:

MS - multiple sclerosis
SWOT - strengths, weaknesses, opportunities, and threats (analysis)
PPI - patient and public involvement
PPI Ignite Network

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Mobilising Meaningful Pharma-Patient Collaboration┃Bronwyn Lewis

Mon, 20 May 2024 17:00:00 +0530

On this episode, we speak with Bronwyn Lewis, Global Head of Patient Engagement at Boehringer Ingelheim.

Drawing on her 20+ years of experience across diverse roles in the pharmaceutical industry, Bronwyn offers deep insights into how the industry is perceiving and responding to the call for deeper patient engagement, the challenges and opportunities for better multi-stakeholder collaboration, and her vision for the future.

Note: In the episode, Bronwyn mentions Boehringer Ingelheim’s Research & Development (R&D) investment data for the year 2022. In 2023, Boehringer Ingelheim’s R&D investments increased by 14.2% to EUR 5.8 billion. R&D investments were substantial, at 22.5% of net sales (source: Boehringer Ingelheim strong growth pipeline acceleration 2023 | Boehringer Ingelheim (boehringer-ingelheim.com)).

Chapters

00:00 - Introductions
01:03 - Defining patient engagement from the industry perspective
04:06 - Bronwyn's journey into patient engagement
06:51 - The Patient Engagement function at Boehringer Ingelheim
10:39 - Composition of Patient Engagement teams in pharma
13:22 - Aligning the motivations of pharma and patient groups
16:42 - Barriers to pharma–patient collaboration
20:23 - Justifying return on investment (ROI)
26:17 - Patient engagement touchpoints and activities
29:16 - Matching best-fit patients to targeted activities
32:21 - Systemic integration of patient insights into all pharma operations
36:25 - Examples of patient insights influencing decisions
38:28 - Boehringer Ingelheim's Global Patient Partnership Summit
44:26 - Collaboration among industry stakeholders
47:56 - Visualizing the future
56:14 - Advice for patients and industry stakeholders
58:13 - Reflections with Caitlin and Clarinda

Resources and abbreviations mentioned

Boehringer Ingelheim
Canadian Pulmonary Fibrosis Foundation
IPF - Idiopathic pulmonary fibrosis
PFMD - Patient-Focused Medicines Development
EUPATI Connect
ROI - Return on investment
HTA - Health Technology Assessment
FDA - U.S. Food and Drug Administration
EMA - European Medicines Agency
PFMD - Pharmaceuticals and Medical Devices Agency
GPPS - Global Patient Partnership Summit
Patient Information Forum
The PIF TICK
Atomic Habits by James Clear
EUPATI Fundamentals training

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History and Evolution of Patient Engagement ┃Tamás Bereczky

Sat, 20 Apr 2024 12:00:00 +0530

On this episode, we talk to Tamás Bereczky, PhD, about how patient engagement came to be, how it has evolved over time, and what the future will look like.

Living with HIV since 2003, Tamás is a stalwart in patient advocacy, serving on various boards and committees, such as the European AIDS Treatment Group and European Community Advisory Board on HIV. He also conducts and publishes academic research on patient involvement, including in R&D and HTA, and develops and delivers training on patient engagement for EUPATI.

Chapters:

0:00 - Introductions

1:53 - Origins of patient engagement

7:13 - Evolution of patient engagement

11:27 - Tamás' personal story

18:15 - Faces and forms of advocacy

22:28 - Landscape-shaping developments and initiatives

26:31 - Challenges faced by Tamás and other advocates

34:08 - Initiatives looking to overcome challenges

38:03 - Need for cooperation across disease areas

41:26 - Tamás’ current work

49:10 - Expectations and hopes

55:08 - Advice for patient advocates and healthcare stakeholders

57:16 - Reflections with Caitlin and Clarinda

Resources and abbreviations mentioned:

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Introducing 'Not Just Patients'

Tue, 02 Apr 2024 17:00:00 +0530

In this pilot episode, we introduce ourselves, our ideas and aspirations for the podcast, and what you can expect to get from listening.

We are excited to bring this podcast to you and hope you enjoy it!

Resources mentioned in the episode:
- EUPATI Patient Expert Training Programme

Let us know what you thought of this episode