European health data space pilot for secondary use of health data

Last updated on 26-9-2023 by Marie Malingreau

Project duration:

October 1, 2022

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October 1, 2024

In short

One of European Commission’s key priorities for 2019-2025 has been the creation of a European Health Data Space to promote digital transformation, and optimise and widen the use of health data. The EHDS2 Pilot project is a 2 year project that aims to establish such an infrastructure for the secondary use of health data starting with 8 EU member states and assesses the ability to scale towards a Union-wide infrastructure, as a core component of the European Health Data Space. The pilot will design, develop, deploy and operate a network of nodes federated by central services that may be provided jointly with the European Commission.

More info on the project website

Project description

Europe has a rich source of digitalized health data that is not used to its full potential due to legal, interoperability and data quality barriers. The proposal for a European Health Data Space (EHDS) legislation that was published by the European Commission in May 2022 aims to facilitate the secure use of health data for research, innovation, policy-making and regulatory activities.

The EHDS2 Pilot consortium will design, develop, deploy and operate a network of nodes (representing different data brokers, holders and data consumers) federated by central services that may be provided jointly with the European Commission. To do so, the EHDS2 Pilot project brings together key actors, such as existing health data authorities (i.e. national authorities empowered by national mandate and legal basis to enable access to health data) and other international or EU-level organizations (e.g., European research infrastructures, European health related agencies).

The general objectives of the EHDS2 Pilot project are:

To develop and deploy an IT infrastructure setting up a network of nodes and delivering basic central services jointly with the European Commission, such as common data discovery, common data access application, and allowing data usage.
The pilot aims to run use cases to test this infrastructure with concrete research questions that would require data from various nodes, member states, research infrastructures or EU agencies. This will also evaluate the benefits of having such an infrastructure.

To that end, the EHDS2 Pilot will develop, explore, and analyze standards on data governance, data quality and data infrastructure for data-sharing between different participating countries across Europe.

Thanks to the EHDS for secondary use, large-scale collaborations in Europe will be possible and able to build critical mass, increase competitive advantage, and ensure greater international resilience, impact and visibility. The EHDS will create new potential for linkage of health and non-health data, promote data enrichment, artificial intelligence, and IT-improvements towards more timely and real time assessments.

Sciensano contributes to the EHDS2 pilot project in the following WPs:

WP2 Dissemination and communication
WP4 Recommendation for being an EHDS node
WP5 IT Infrastructure
WP6 Metadata Standards — Towards a common health Resource Description Framework (RDF) representation of metadata for interexchange between data portals — leaders
WP8 Data interoperability, quality, and protection
WP9 Use cases management