Unpacking the European Health Data Space Regulation: solution or complication?
The European Health Data Space Regulation (EHDSR) promises nothing less than the first step towards a European Health Union. But behind its ambitious vision lies a complex web of legal, ethical and societal questions. Repeatedly debated during the legislative process, finally translated into a Regulation.
Praktische info:
Leertraject
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This mini symposium invites you to explore:
- The metadata catalogue: key to a borderless European Health Union, or a bureaucratic maze?
- How to deal with GDPR’s lawfulness principle: how can consent, public interest or legitimate interest carry the load?
- The implications of a sector-specific approach to data subjects’ rights: is the EHDSR going above and beyond or was data subject empowerment sacrificed in the final sprint?
Join us for a thought-provoking afternoon of critical reflections, bold questions, and dynamic debate.
- Debate-triggering messages from VIB, pharma, UZ Gent and the Belgian Data Protection Authority
- Combined with insider views from the Health Data Authority, UGent and Sciensano
- And an opportunity to further discuss with panel members from 4 different disciplines
Programma
17.00 - Arrival and check-in
17.30 - Introduction (prof. dr. Griet Verhenneman)
17.40 - Presentations
TOPIC 1: Patient data, research data, statistical data,... Can we count on the meta-data catalogue as a solution towards a European Health Union or will it complicate the path?
- Health related research data and the EHDS: the perspective of a research institution - René Custers (VIB)
- The implications of the meta-data catalogue for healthcare providers, researchers and data custodians - Justin Ansotte (Belgian Health Data Agency)
TOPIC 2: Consent, public interest, legitimate interest... Is the EHDSR a solution or complication for finding the required legal basis?
- When finding a legal basis is less self-evident. The collection and (re-)use of real-world data for research driven by companies - Laurence Einsweiler (Pfizer) and Dries Van Briel (J&J)
- Understanding the legal bases under the EHDSR - Magdalena Kogut-Czarkowska (UGent, Timelex)
TOPIC 3: Understanding the legal basis under the EHDSR.
- Unpacking the EHDSR as a sector-specific approach to data subject rights - Koen Gorissen (Belgian Data Protection Authority)
- The impact of the EHDSR for citizens and society. Balancing individual and collective rights? - Wannes van Hoof (Sciensano)
18.30 - Debate
Unpacking the EHDRS in a multi-stakeholder environment: a solution or complication to handling different interests, rights and obligations?
Introduction by prof. dr. Anja Geerts, UZ Gent
Members of the panel are:
- Nils Broeckx (Kankerregister, UAntwerpen)
- Magali Feys (Attorney at law, AContrario)
- Bart Vannieuwenhuysen (iHD)
- Healthcare providers’ perspective Sara Roda (EU Senior Policy Advisor at Standing Committee of European Doctors)
- Moderator: prof. dr. Tom Goffin (Metamedica, UGent)
19.30 - Drinks reception