Deutsch 
The EHDS in Europe: timelines, data types and early experiences
The first international workshop of the EHDS project group took place as part of ISCB/GMDS 2026 in Freiburg and attracted more than 90 participants. Following a discussion of the challenging EHDS timeline for primary care in March 2027 and the March 2029 milestone for secondary use, Ulrich Sax gave an overview of EHDS activities in Europe. The pioneers are more likely to be found in Scandinavia - for example, Findata with Kapseli - and in countries with excellent digital health infrastructure, such as Estonia. The TEHDAS and TEHDAS2 projects provide reports from country visits, while the EU project on digital strategy offers insights into citizens' access to e-health data. It became clear that Article 51 of the EHDS distinguishes between data from electronic health records, medical devices, registries, socio-economic data and clinical trials. Genetic, epigenomic and genomic data, along with other human molecular data, are listed separately.
France: making research documentation visible and accessible
Andréa Blivet from the French Health Research Portal (FReSH) described the French approach to preserving the wealth of research documentation within the EHDS. FReSH was funded as part of a national initiative to record and classify health databases. The FReSH portal provides access to datasets from French health research, including metadata and information on how to apply for data access. The French national metadata catalogue is currently being mapped to HealthDCAT-AP. Concerns within the research community about the implementation of the EHDS Regulation have been set out in a manifesto on the ethical and responsible reuse of health data for research.
FReSH offers excellent opportunities for collaboration, for example on mapping to HealthDCAT-AP through the Research Health Metadata Working Group.
The Netherlands: communication as a key to secondary use
In the next presentation, Sabrina Timmers from Health-RI in the Netherlands outlined the organisation's communication and dissemination strategy for the secondary use of health data. Health-RI is working with the Ministry of Economic Affairs and the Ministry of Health on the implementation of the Health Data Access Body (HDAB). The organisation provides a national health data portal and data catalogue for the Netherlands, which could serve as the country's national EHDS hub. The communication and dissemination strategy focuses on raising awareness among all stakeholders - including data holders, data users, citizens and patients - and enabling concrete action on the secondary use of health data. The respective website provides tailored content for different audiences. Health-RI's communications toolkit also includes a range of resources to help, for example, healthcare professionals raise awareness among the people they work with, including patients.
Sabrina offered to collaborate with the French and German EHDS groups and invited them to Health-RI's annual conference in Utrecht. The discussion highlighted the need to communicate information about the EHDS at B1 level to reach a broad section of the public.
Collaboration on the EHDS: priorities for 2027-2029
In the final session, Sebastian Semler, Scientific Director of TMF - the Technology, Methods and Infrastructure for Networked Medical Research association in Berlin - presented the EHDS network project and outlined the EHDS project group's agenda for 2027-2029. It includes several important opportunities for collaboration on the EHDS in Germany and across Europe.
--------------------
Many thanks to Christian Haverkamp and Lisa Lyssenko for organising the event on site. On behalf of NFDI4Health and the GMDS project group, we would also like to thank all the speakers, participants for making this such a successful start.
