TEHDAS JA

Project Description

The Joint Action Towards the European Health Data Space (TEHDAS), coordinated by Finland (Finnish Innovation Fund Sitra), involves a consortium of 21 EU Member States and four other European countries. It was launched on 1 February 2021 and will last until 1 August 2023. The main purpose of the Joint Action is to develop common European principles for the secondary use of health data. TEHDAS JA assists Member States and the European Commission in developing and promoting concepts for sharing health data in secondary use for the benefit of citizens’ health, public health, research and innovation. The aim of the action is to focus on the future benefits that European citizens, communities and businesses will benefit from secure and seamless access to health data, wherever they are stored.

The action focuses on:

•  involving other European projects and policy makers in the dialogue on the European Health Data Space;

•  ensuring the sustainability of secondary use of health data in Europe;

•  developing a governance model for cross-border cooperation between European countries in the secondary use of health data;

•  promoting the reliability and compatibility of health data for secondary use and access to it;

•  clarifying the role of individuals in the secondary use of health data and including them in dialogue on the use of health data for research and policy-making.

The results of the TEHDAS JA will provide elements (building blocks) to the European Commission to prepare a legislative proposal for a European Health Data Space and support a pan-European dialogue following the legislative proposal.

Added Value

TEHDAS JA puts the cross-border use of health data at the heart of better public health in Europe.

The project contributes to the provision of better personalised health services and stimulates innovation such as the development of new medicines and the development of knowledge-based policies.

The main results of the Joint Action include the guidelines for establishing cross-border cooperation for secondary use of health data, which highlight six main steps towards establishing bilateral or multilateral cooperation and proposing legislative options for the European Commission to address identified obstacles to cross-border data exchange.

Expected Results and Materials

The main results of the Joint Action include the guidelines for establishing cross-border cooperation for secondary use of health data, which highlight six main steps towards establishing bilateral or multilateral cooperation and proposing legislative options for the European Commission to address identified obstacles to cross-border data exchange.

The report titled Description of steps in accessing individual-level data for national and EU researchers in a selection of centralised systems and decentralised systems JA TEHDAS notes, inter alia, that the diversity of health data management in the EU Member States hampers the use of data and stresses the importance of establishing a single point of contact per Member State responsible for accessing health data and centralised processing of data requests.

The project also identified potential financial mechanisms for secondary use of health data. Sustainable funding is crucial for the successful exchange of health data across Europe.

On 3 May 2022, the European Commission published a Proposal for a Regulation on a European Health Data Space.

Project Duration: 1 February 2021–31 July 2023

Supporting Organisation: Finnish Sitra Innovation Fund, Finland

Project Partner: National Institute of Public Health (NIJZ)

Funding: The Joint Action Project (TEHDAS) was co-financed by the European Union under the Third Health Programme (2014–2020).