On 1 October 2024, Marc LANGE - EHTEL’s General Secretary was invited to give a talk on what’s happening regarding the European Health Data Space (EHDS) and what EHTEL is doing to assist the future implementation of the Regulation. The meeting was co-organised by the data working group of the European Children’s Hospitals Organisation (ECHO) in conjunction with the PHEMS project. The meeting was key for people working on or with children’s data, especially in hospitals.
In his presentation and associated discussions, Mr Lange’s offered a review of the ‘big picture’ underpinning the EHDS. He included the indicative implementation timelines for the EHDS. He indicated various points at which decisions must take place on the data space. He pointed out various important initiatives in Europe that are already working on EHDS-related implementation. Last but not least, he described the EHTEL EHDS Implementers' Task Force, which met online for the first time on 5 November 2024.
Implementation of the EHDS Regulation. Source: European Commission
In more detail
The timelines indicated for the EHDS range over areas like the primary uses of health data, electronic health record (EHR) systems certification, and secondary uses of health data. They are currently predicted to end in 2036. Initiatives involve the European endeavour for the 2030 Digital Compass; Europe-wide projects like xShare and the Europe-wide deployment of the Yellow Button and the Catalunyan-based Blue Button. Seven or more projects have helped, and are helping, to produce specifications, tools, and supporting materials, including the electronic health record format (eEHRxF) and ‘X-Bundles’. Mr Lange offered personal insights into enabling citizens to become data-sharing actors. He emphasised EHTEL’s work on what practical actions European Member States and regions need to undertake to implement the EHDS in the future, and the main challenges that EHDS-based data ecosystems may face.
Watch Marc Lange's presentation below:
EHTEL’s own work on the EHDS
At its 25th Anniversary Symposium on 4 December 2024, EHTEL plans a session on EHDS-enabling infrastructure. Register to attend.
EHTEL also welcomes friends and members, to join the association in its EHDS implementation activities from 2025 onwards.
For further information
See EHTEL support materials on the EHDS like:
- The EHDS overall
- The EHDS Timelines
- The EHDS Groundwork
- EHDS: Room for improvement?
Background on the workshop hosts
ECHO brings together leading children’s hospitals from across Europe and beyond. It is a community of healthcare professionals who are dedicated to children’s well-being. It aims to stay at the forefront of paediatric care. It includes several working groups, including one on data. Hospital members of the data working group range from hospitals based in northern, southern, and western Europe and, to the east, include Latvia, as well as being based as far afield as Israel and Ukraine. For information, see the official ECHO website.
PHEMS is a European Union-financed project, bringing together a range of hospitals that work on computation and compatibility of data generation across a variety of clinical specialities. It still has two further years to run. For more information, visit the official website.
ECHO and PHEMS. Source: ECHO