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 discipline
Info & registration
Programme
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?
- 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 – (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.