Unpacking the European Health Data Space Regulation: solution or complication?
Description
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.
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.
Programme
17.00 - Arrival and check-in
17.30 - Introduction (prof. dr. Griet Verhenneman)
17.40 - Presentations
TOPIC1: 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?
- The challenge of a meta-data catalogue on research institutes working with personal and non-personal health-related data - 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)
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
Remarks
Accreditation (for Belgian participants):
Accreditation has been requested with OVB (Orde van Vlaamse Balies), IGO (Instituut voor Gerechtelijke Opleiding), IBJ (Instituut Bedrijfs Juristen) and OBFG (l'Ordre des barreaux francophones et germanophone de Belgique), 2 points.
For those who register but do not actually attend, the IGO will not bear the costs. However, replacement by a colleague is allowed, subject to prior notification to gandaius@ugent.be.
Live event with recording, no livestream:
The event will take place at the Faculty of Law & Criminology in Ghent. We are recording the event to be (re)viewed afterwards, eg when you are not available or working abroad. In this case, choose "online particpation" while enrolling.
Register here
Unpacking the European Health Data Space Regulation: solution or complication?
No live-streaming: if you cannot attend on 18/09 in Ghent, we will share the recording afterwards (proof of attendancy can also be obtained this way).