Shows
Not Just PatientsShaping Health Policy with Patient Input | Urvashi PrasadJoin 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...2025-06-291h 00
Not Just PatientsProfessionalising Patient Engagement┃Emma SutcliffeThis 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...2025-05-2755 min
Not Just PatientsA Year in Review┃LIVE TAKEOVER with Joel NelsonIn 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...2025-04-1448 min
Not Just PatientsBalancing Professional Life and Chronic Illness┃Lilly StairsOn 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...2025-03-2556 min
Not Just PatientsBolstering Rare Disease Research through Collaboration┃Jo BalfourJoin 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...2025-02-2759 min
Not Just PatientsDesigning Patient-Aligned Clinical Trials┃Maya ZlatanovaJoin 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...2025-01-2759 min
Not Just Patients[LIVE] The Advocacy Life | Danielle Drachmann and Sumaira AhmedJoin 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...2024-12-161h 24
Not Just PatientsAdvancing Equity, Diversity, and Inclusion in Healthcare┃Prof. Lara BloomJoin 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.Chapters00:00:00 - Introductions00:01:20 - Lara's journey into advocacy00:04:16 - State of DEI...2024-11-2659 min
Not Just PatientsDemystifying Regulatory Affairs and HTA┃Anke-Peggy HoltorfOn 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...2024-10-231h 01
Not Just PatientsNavigating Digital Health and Health Data┃Mark DumanOn 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.Chapters0:00 - Introductions1:47 - Mark's story2024-09-251h 00
Not Just PatientsMedical Publications: From Access to Patient Authorship┃Avishek PalOn 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.2024-08-291h 00
Not Just PatientsEmbracing Shared Decision-Making in Patient Care┃Dr. Victor MontoriIn 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...2024-07-231h 00
Not Just PatientsEmbedding Patient Perspectives into Clinical Research┃Robert JoyceOn 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...2024-06-2459 min