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Not Just Patients
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.
Not Just Patients
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 - Introductions
1:53 - Origins of patient engagement
7:13 - Evolution of patient engagement
11:27 - Tamás' personal story
18:15 - Faces and forms of advocacy
22:28 - Landscape-shaping developments and initiatives
26:31 - Challenges faced by Tamás and other advocates
34:08 - Initiatives looking to overcome challenges
38:03 - Need for cooperation across disease areas
41:26 - Tamás’ current work
49:10 - Expectations and hopes
55:08 - Advice for patient advocates and healthcare stakeholders
57:16 - Reflections with Caitlin and Clarinda
Resources and abbreviations mentioned:
- EUPATI - European Patients’ Academy on Therapeutic Innovation
- EATG - The European AIDS Treatment Group
- European Community Advisory Board
- ECDC - European Centre for Disease Prevention and Control
- EMA - European Medicines Agency
- FDA - U.S. Food and Drug Administration
- EPF - European Patients Forum
- IAPO - International Alliance of Patients' Organizations
- Deutsche Aidshilfe
- EMIS - The European MSM Internet Survey
- CORE - Community Response to End Inequalities
- NICE - National Institute for Health and Care Excellence (UK)
- 'Epistemic injustice' as explained by Prof. Havi Carel
Have feedback or suggestions for us? We'd love to hear from you!
Website: notjustpatients.com
LinkedIn: Not Just Patients
Email: info@notjustpatients.com
