Information Points for Citizens under the EHDS Workshop Report V2.0

The aim of this workshop was to analyse how citizens are appropriately informed and involved in the sharing of their health data for research through so called information portals providing ongoing information on data-driven health research. It showcased existing public information initiatives on data sharing activities as well as examples of communication failures.

Following presentations from different initiatives and perspectives COVID-19 campaigns (KRISTIANIA University), ELGA (Austria), French Public Register (HDH, France), Findata (Finland), public portal of Medical Informatics Initiative in Germany (TMF, Germany), Estonian Biobank (Estonia), 1+MG Initiative (LNDS), industry (EFPIA), Multi-Layered Citizen Communication (HDL), Data Saves Lives Initiative (EPF; patients’ perspective), Health data sharing from the perspective of rare diseases (EURORDIS; patients’ perspective), European Doctors’ perspective (CPME), it was concluded that EHDS should build on existing initiatives and should involve in the further development of the information portals for citizens all relevant stakeholders from the beginning.

The outcome of the workshop are recommendations that will inform the implementation of Art. 35 (3) of the future EHDS Regulation. Ideally, national nodes and Health Data Access Bodies will be able to build on existing experience and learn from success factors as well as pitfalls.

This workshop was organised by the EU-Project EHDS2Pilot on 3-4 September 2024 in Brussels and was attended by 50 participants.