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Hello and welcome to Not Just Patients, a podcast where we break barriers to meaningful patient involvement in healthcare.
We’re your hosts, Caitlin Rich and Clarinda Cerejo. We’re both rare disease patients and qualified patient experts. And we are so much more.
Join us and our guests as we challenge patient stereotypes, highlight successful collaborations in healthcare, and share energizing tales of turning adversity into advocacy.
18 Episodes
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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 prog...
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 ...
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 th...
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 20...
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 glob...
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 patie...
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, a...
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 passion...
![[LIVE] The Advocacy Life | Danielle Drachmann and Sumaira Ahmed](https://storage.buzzsprout.com/6i9ihn1niaproeajwnbhc2tdqcmf?.jpg "[LIVE] The Advocacy Life | Danielle Drachmann and Sumaira Ahmed")
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...
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 import...
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 ...
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 con...
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 informa...
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 mi...
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, ...
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 Inge...
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 ...
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
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