TEHDAS identifies funding options for secondary use of health data
Sustainable funding is crucial to EU-wide health data sharing. TEHDAS has identified potential funding instruments for the secondary use of health data but also looked at the funding challenges.
The recent report of the joint action Towards the European Health Data Space (TEHDAS) examines EU-level and national funding for health data collection, access and use for secondary purposes, such as research. To ensure the economic sustainability of the forthcoming European health data space (EHDS), the EU and the member states will need to solve how to share the costs of cross-border health data access and sharing.
To function properly, the EHDS will need sustainable organisational and resource arrangements at EU and national, and in some cases regional, levels. Funding is one of the most important of these arrangements. TEHDAS has called for a sustainability plan to address these questions as a prerequisite for the successful launch and running of the EHDS.
The report concludes that both EU and national and local funds will be needed to build a European data access and sharing system.
Data cannot be shared in the EU without effective systems for data collection and access in member states. While the European coordination needs to be funded from the EU budget, member states will incur expenses as governments will have to develop their national capacity to join the European data exchange and benefit from using data.
The report highlights many complex questions in reaching the economic sustainability of the EHDS. For example, often-used project-based EU funding is not predictable and needs substantial resources from the member states.
The infrastructures that will be developed as part of the EHDS need to be constantly maintained and co-ordinated. This requires permanent resource allocations and funding similar to the data sharing initiatives managed and maintained by EU agencies.
The report is based on an analysis of the funding of six existing EU health data sharing mechanisms. It gives an overview of the EU’s funding instruments relevant to the secondary use of health data and looks at the country experiences.
TEHDAS will continue to study the economic sustainability of the secondary use of health data and a final report will be issued in early 2023.