Apr 20 2024
History and Evolution of Patient Engagement ┃Tamás Bereczky
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 - Introductions1:53 - Origins of patient engagement7:13 - Evolution of patient engagement11:27 - Tamás' personal story18:15 - Faces and forms of advocacy22:28 - Landscape-shaping developments and initiatives26:31 - Challenges faced by Tamás and other advocates34:08 - Initiatives looking to overcome challenges38:03 - Need for cooperation across disease areas41:26 - Tamás’ current work49:10 - Expectations and hopes55:08 - Advice for patient advocates and healthcare stakeholders57:16 - Reflections with Caitlin and ClarindaResources mentioned:EUPATI - European Patients’ Academy on Therapeutic InnovationEATG - The European AIDS Treatment GroupEuropean Community Advisory Board ECDC - European Centre for Disease Prevention and ControlEMA - European Medicines AgencyFDA - U.S. Food and Drug Administration EPF - European Patients ForumIAPO - International Alliance of Patients' OrganizationsDeutsche AidshilfeEMIS - The European MSM Internet SurveyCORE - Community Response to End InequalitiesNICE - National Institute for Health and Care Excellence (UK)'Epistemic injustice' as explained by Prof. Havi CarelHave feedback or suggestions for us? We'd love to hear from you!Website: notjustpatients.comLinkedIn: Not Just PatientsEmail: info@notjustpatients.com
