Either for research, innovation or policy-making, accessing health data may be an obstacle course… Hence the legislative proposal from the European Commission in May 2022 on a trustworthy, safe and secure European Health Data Space (EHDS).
So, how could Luxembourg contribute to turning this European ideal into a reality?
LNDS, hands-on work
Created in 2022, the Luxembourg National Data Service (LNDS) will be a catalyst for the national research, innovation and policy-making ecosystem by:
- animating a matchmaking environment between data owners (such as researchers) and data consumers (such as policymakers),
- innovating the tools and the governance mechanisms,
- educating and guiding participants of the data economy,
- enabling data intermediaries, brokers, clearing house, identity and trusted third party services.
The LNDS is also engaged on an international level, especially to deploy the EHDS. First, to empower individuals through increased digital access to their personal health data and support to their free movement. Second, to provide a trustworthy and efficient set-up for the re-use of health data for research, innovation and policy-making.
But how to support the cross-border use of health data in a multi-jurisdictional environment, where each country manages and facilitates the secondary use of health data in such a different way? “This is not easy juice, right?”, said Bert Verdonck ironically. Each country will need its own roadmap to meet all the EHDS requirements.
However, the European Commission is still confident and hopes to come to a final proposal by the end of the year – although it should go into action in a very gradual manner.