In January, Paul Quinn together with some other HALL members (Anastasiya Kiseleva, Sara Roda and Wenkai Li) had a meeting with the Committee on Civil Liberties, Justice and Home Affairs (LIBE Committee) of the European Parliament. The informal meeting aimed to discuss the EC Proposal for the European Health Data Space (EHDS) Regulation. HALL members shared their position on the EHDS Proposal and expressed specific issues that might require further consideration in the next versions of the legislative act: lack of some definitions and non-clarity of others, the EHDS status as lex specialis to certain provisions of the GDPR, the legal regime for the health data of deceased individuals, the correlation between the EHDS Proposal and the AI Act Proposal (and some missing points of the correlation), individual rights for the secondary use and lack of clarity for their scope and abilities to exercise. After the meeting, the HALL member provided their written feedback on the EHDS Proposal to colleagues from the LIBE Committee.
The proposal for a European Health Data Space is complex and challenging but has enormous potential to improve both healthcare and research in the European Union.