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The TEHDAS project developed joint European principles for the secondary use of health data. The work involved 25 countries.

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What were we doing?

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Our goal was that, in the future, European citizens, communities and companies would benefit from secure and seamless access to health data regardless of where it is stored.

TEHDAS, the joint action Towards the European Health Data Space, helped EU member states and the European Commission to develop and promote concepts for the secondary use of health data to benefit public health and health research and innovation in Europe.

Our goal was that, in the future, European citizens, communities and companies would benefit from secure and seamless access to health data regardless of where it is stored.

The project focused on:

  • engaging other European projects and policymakers in a dialogue about the European Health Data Space;
  • ensuring sustainability of the secondary use of health data in Europe;
  • developing a governance model for cross-border co-operation in the secondary use of health data between European countries;
  • promoting the reliability and compatibility of and access to health data for secondary use;
  • clarifying the role of individuals in the secondary use of health data and including them in dialogue about the use of health data for research and policymaking.

The results of the TEHDAS project provided elements to the European Commission’s legislative proposal on the European Health Data Space as well as supported the pan-European dialogue that followed the proposal.

What was it about?

The cross-border sharing of health data has so far been project-based and there are no legal bases or common practices for the secondary use of health data in Europe. A lack of clarity and differing interpretations of the General Data Protection Regulation (GDPR) means that health data is being underused in research and decision-making.

The Covid-19 pandemic has highlighted the urgent need for European-wide health data sharing and co-ordination.

The primary use of health data is the use of health information, such as patient records, to treat a person. The secondary use of health data means using health data for purposes other than the primary reason for which they were originally collected. The secondary use can be, for example, research, decision-making, development and innovation, and education.

The benefits of the secondary use of health data include providing better healthcare services and personalised care for people, and thereby saving lives, increased business opportunities for companies and cost savings for societies.

Who was involved?

The TEHDAS project involved partners from 21 EU member states and four other European countries. The project was co-ordinated by the Finnish Innovation Fund Sitra.

TEHDAS was funded by the Health Programme of the European Union and the European countries involved.

Where are we now?

The project started on 1 February 2021 and ran until 31 July 2023.

TEHDAS produced several recommendations for the European Commission and member states to enable EU-wide secondary use of health data. The main TEHDAS findings were combined in a single report and published on 14 September 2023.

Sitra has been appointed to lead a new joint action under the EU’s fourth Health Programme (EU4Health) that will start in 2024 with the participation of 29 European countries.