Not Just Patients

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.

Wishin...

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, w...

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...

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 d...

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...

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 o...

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...

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...

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 c...

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...

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, U...

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...

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 r...

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...

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 o...

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<...

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.

<...

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...

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...

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 s...

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

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

Have feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: info@notjustpatients.com