JAN 26

Galvanising Multistakeholder Collaboration for Meaningful Change | Derick Mitchell

Join us for an inspiring conversation with Derick Mitchell, Executive Director of Patient Focused Medicines Development (PFMD), adjunct professor at Trinity College Dublin, and a dedicated leader in patient engagement and multistakeholder healthcare innovation. Derick’s journey has taken him from translational research to his previous role as CEO of IPPOSI—the largest patient network in Ireland—where he spent close to a decade championing partnerships between patients, government, academia, and industry to shape patient-centered health policy. At PFMD, he now leads international efforts to bring all stakeholders together to transform healthcare for and with patients. In this episode, we delve into why multistakeholder collaboration is so crucial for patient engagement (and tough to do well!), and how we can move beyond good intentions to lasting change. Derick shares practical examples from Ireland and globally; tackles the barriers that keep patients’ voices from truly shaping decisions; and offers actionable steps for building more inclusive, impactful partnerships. Whether you’re a patient, professional, or changemaker, this episode is packed with insights on turning collaboration from a talking point into real, everyday practice. Chapters 0:00 - Introductions and episode overview2:00 - Derick's journey into patient engagement6:04 - Challenges with embedding patient voices12:46 - Defining value for different stakeholders17:09 - Ensuring representation and diversity26:45 - Rewards and incentives for collaboration28:46 - Real-world examples33:22 - Evolution of collaborative patient engagement37:00 - Why collaboration matters for healthcare transformation44:44 - Barriers to multistakeholder collaboration50:13 - Advice for driving collaboration58:44 - Reflections with Caitlin and ClarindaResources & abbreviations AI – Artificial IntelligenceCTTI – Clinical Trials Transformation InitiativeHTA – Health Technology AssessmentIHI – Innovative Health Initiative IPPOSI – Irish Platform for Patient Organisations, Science, and IndustryIrish Rare Disease PlanPatient Engagement Management SuitePFMD – Patient Focused Medicines DevelopmentPPI Ignite The SynergistPCORI – Patient-Centered Outcomes Research InstitutePEOF – Patient Engagement Open ForumHave feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

1h 3m

12/15/2025

Reflections on 2025, Hopes for 2026 | The Community Speaks

What was one key learning around patient engagement that you're taking away from 2025? What gave you hope in patient engagement and advocacy this year? What’s one thing you’d love to see in patient engagement next year? These are the questions that we asked not one... not two... but FIVE amazing guests for this special year-end episode of Not Just Patients. Listen to our incredible guests Michelle Warner, Connie Montgomery, Dr Ratna Devi, Richelle Flanagan, and Keith Berelowitz, as they share their key highlights from 2025 and hopes for 2026. Wishing all our listeners a happy holidays and happy new year! Any speaker, topic, or event requests for 2026? Please feel free to reach out :) Speaker bios: Michelle Warner (01:06) is Co-Founder of The Patient Project, aiming to bring science and patients together as equal partners, sharing ambitious patient-focused goalsConnie Montgomery (06:14) is a living experience expert (LEE) diagnosed with Factor Seven Deficiency and Pemphigus Vulgaris, serving as a global patient advocate with several national and international entitiesDr Ratna Devi (09:59) is the CEO and Co-Founder of DakshamA Health & Education, leads Indian Alliance of Patient Groups (IAPG), and is a Board Member for International Alliance of Patient Organisations (IAPO), Health India Alliance (HIA), and Asia Pacific Alliance for Rare Disease Organisations (APARDO)Richelle Flanagan (14:29) is a registered dietitian living with young-onset Parkinson’s, who has co-founded digital health solutions including My Moves Matter and the Women’s Parkinson’s ProjectKeith Berelowitz (18:13) is the Founder and CEO of pRxEngage, a platform designed to engage, educate, and empower people to take part in clinical research with confidenceHave feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

30 min

11/24/2025

Co-Creating HealthTech Solutions | Cécile Tardy-Srinivasan

Join us for an insightful conversation with Cécile Tardy-Srinivasan, EUPATI Fellow, patient advocate, and leader of the DayOne Accelerator, as we explore what it takes to bring meaningful patient and stakeholder involvement to health tech innovation. With over 20 years of cross-sector experience bridging pharma, healthcare technology, and patient advocacy, Cecile draws upon her own journey as a rare disease patient to share unique perspectives on connecting patients, clinicians, innovators, and industry. As a mentor, advocate, and innovation accelerator, she is dedicated to breaking down barriers and enabling collaboration for patient-centred solutions. In this episode, we dive into the vast and evolving landscape of health tech—what it encompasses, how patient voices can shape technology, and why thoughtful patient involvement is critical from design to implementation. Cécile shares her story, examines key challenges for start-ups, highlights real examples of patient-led solutions, and offers practical advice for both innovators and patients seeking to drive change in healthcare. Chapters 0:00 - Introductions and episode overview1:52 - Defining health tech8:42 - Cécile's story and journey into innovation11:34 - The evolution and challenges of health tech19:42 - The DayOne Accelerator Programme25:52 - Patient involvement in health tech37:04 - Cecile’s vision for the future of health tech40:04 - Advice for health tech innovators and patients45:08 - Reflections with Caitlin and ClarindaResources and Abbreviations DayOne Accelerator IBDreliefAncora - Find Cancer Clinical TrialsTrial HubEUPATI – European Patients’ Academy on Therapeutic InnovationFDA – Food and Drug Administration (USA)PFMD – Patients Focused Medicines DevelopmentCRO – Contract Research OrganizationR&D – Research and DevelopmentHTA – Health Technology AssessmentAI – Artificial IntelligenceHave feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

55 min

10/15/2025

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

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

1h 18m

09/24/2025

Raising Public Awareness through Multi-Channel Advocacy | Trishna Bharadia

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 - Introductions00:01:46 - Trishna's journey into advocacy00:08:02 - Importance of raising awareness00:13:43 - Exploring different advocacy channels00:21:05 - Strictly Come Dancing experience00:30:05 - Normalising disability/chronic illness in mass media00:33:36 - Caregiver/family involvement in advocacy00:38:59 - Countering cultural and societal stigma00:43:42 - Advice for other patient advocates00:51:10 - Reflections with Caitlin and ClarindaResources and Abbreviations MS - multiple sclerosisMS SocietyAsian MSMS Society Stop MS AppealISPEP -International Society for Patient Engagement ProfessionalsPatient Information Forum (PIF)NMO - neuromyelitis optica spectrum disorderHave feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

58 min

08/28/2025

Building Empathy by Understanding Patient Experience | Mark Doyle

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 - Introductions00:01:31 - The importance of empathy in healthcare00:11:20 - Defining the holistic patient experience00:20:49 - Mark’s journey from acting to healthcare00:25:14 - The power of patient storytelling00:27:50 - Experiencing ‘A Life in a Day’ of a patient00:36:10 - Understanding the impact on carers and families 00:42:28 - Co-creating simulations with patients and families00:45:00 - Initiatives driving empathy in healthcare00:48:38 - Mark’s long-term dream for empathy in healthcare00:50:03 - Advice for embedding empathy in healthcare 00:52:56 - Reflections with Caitlin and ClarindaResources & abbreviations AI – Artificial IntelligenceA Life in a DayDementia BusHTA – Health Technology AssessmentMS – Multiple SclerosisRSV – Respiratory Syncytial VirusVR – Virtual RealityHave feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

59 min

07/23/2025

Equipping Patients for Shared Decision-Making | Estelle Jobson

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: SBAR (Situation-Background-Assessment-Recommendation) TeamSTEPPS (Team Strategies & Tools to Enhance Performance and Patient Safety) Ready Steady Go ProgrammeAsk Me 3 Not Just Patients episode with Dr. Victor Montori: Embracing Shared Decision-Making in Patient Care Have feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

1 hr

06/29/2025

Shaping Health Policy with Patient Input | Urvashi Prasad

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 kinaseEUPATI NGO - Non-governmental organisationPolicy Brief on Alternative Financing for Cancer Care in IndiaHave feedback or suggestions for us? We'd love to hear from you! Website: notjustpatients.com LinkedIn: Not Just Patients Email: info@notjustpatients.com

1 hr

Not Just Patients

Episodes

Galvanising Multistakeholder Collaboration for Meaningful Change | Derick Mitchell

Reflections on 2025, Hopes for 2026 | The Community Speaks

Co-Creating HealthTech Solutions | Cécile Tardy-Srinivasan

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

Raising Public Awareness through Multi-Channel Advocacy | Trishna Bharadia

Building Empathy by Understanding Patient Experience | Mark Doyle

Equipping Patients for Shared Decision-Making | Estelle Jobson

Shaping Health Policy with Patient Input | Urvashi Prasad

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