Statement to the European Commission on the European Health Data Space
CSC agrees with the need to pay special attention to the issues and barriers that are specific to the exchange of and access to health data and therefore welcomes the Commission’s intention to create a dedicated legislative framework for the European Health Data Space. However, it must be ensured that the sector-specific data spaces do not become silos but are developed in coherence and made interoperable. CSC also thinks that it is important that the health sector leverages the investments made in other European data management and high-performance capacities.
EHDS must be built on structures and practices developed in existing cooperation projects, and its legislative framework must take into account the lessons learnt from similar national legislations (e.g. the need for sufficient transition period and resources to those implementing the new policy, as highlighted by the experience from Finland’s Act on the Secondary Use of Health and Social Data). Just for information security reasons, EHDS must be built as a federated infrastructure that connects existing data repositories rather than by creating a new, centralised one. Proper functioning of such federated data space requires significant efforts to ensure the interoperability between data in the separate repositories.