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

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