TEHDAS - Joint Action Towards the European Health Data Space (TEHDAS)

Last updated on 5-3-2024 by Marie Malingreau
Project duration:
February 1, 2020
-
June 30, 2023

In short

The Joint Action Towards the European Health Data Space (TEHDAS) was a two year initiative co-funded by the European Commission with the support of 25 EU Member States. The goal of the project was to develop and promote concepts related to data sharing for citizens’ health, public health, as well as health research & innovation in Europe, necessary for the development and implementation of the European Health Data Space.

More information on the TEHDAS project website

Project description

The main objective of the European Health Data Space is to promote research and innovation at the EU level to improve the quality of healthcare and health systems. A special focus was to include citizens as it is their data which will be reused under this framework, respecting their rights and high security standards.

The launch of TEHDAS takes took place just a few weeks after the publication of the EUData Governance Act’ (DGA) proposal. The objective of the latter wasis to “improve the conditions for data sharing in the internal market, by creating a harmonised framework for the exchange of such data”.

TEHDAS thus supporteds the implementation of the European Health Data Space by providing concepts for: Data governance structures, including functions and responsibilities of the relevant actors; Guidelines on using health data for research and policy making; Guidelines on Ethical Legal and Social issues in the European Health Data Space; Data quality framework encompassing semantic interoperability and FAIR principle; Guidelines for setting up the infrastructure architecture and technical interoperability of the European Health Data Space;  and economic models for sustainability.  

The specific objectives of TEHDAS were:

  1. Producing elements and options for an (operational) framework and governance for the exchange and secondary use of health data between (European) countries, respecting the principles of transparency, trust, FAIRness*, citizen empowerment and a common good.
  2. Provide solutions on quality, interoperability and fairification for the trustworthy secondary use of health and health care data with a view to fostering the digital transformation of the European health systems.
  3. Provide a catalogue of services to support the secondary use of health data across through the EHDS as well as the architecture and infrastructure options required to its deployment.
  4. Provide a European perspective to improving citizen capacity to engage with data and improve citizen trust in data sharing and strengthen the health data governance mechanisms at EU level and in the Member States relevant for cross-sector data use and for data use in the common sectoral data spaces.
  5. Ensure the sustainability and implementation of the proposals of the Joint Action by suggesting concrete ways to integrate them into the national and European health data landscape.

*The FAIR data principles are: Findable, Accessible, Interoperable, Reusable

Consortium

Partners

  • 48 partners
  • 25 countries

Structure

Work Packages (WP) Leading Institute, Country
WP1 Coordination The Finnish Innovation Fund Sitra, Finland
WP2 Dissemination The Finnish Innovation Fund Sitra, Finland
WP3 Evaluation Shared Services of the Ministry of Health, EPE, Portugal
WP4 Outreach engagement and sustainability Sciensano, Belgium
WP5 Sharing for health data Swedish eHealth Agency, Sweden + Directorate Information Policy of the Ministry of Health, Welfare and Sports, The Netherlands
WP6 Excellence in data quality  The Institute for Health Scieces in Aragon, Spain + Central Denmark Region, Denmark
WP7 Connecting the dots The Institute for Health Scieces in Aragon, Spain
WP8 i Citizen French Health Data Hub, France + National Healthcare Service Center, Hungary

Sciensano contributed to the TEHDAS Joint Action network through the following work packages (WP’s) : in WP4 as a WP lead, in WP5 as Task lead and in WP6, 7 and 8 as a contributor.

Work Package 8: iCitizen — Health Data e-consultation

Sciensano’s work within WP8: 01/02/2021 - 01/02/2023

Main outputs:

The citizen e-consultation “Healthy Data — your views on the reuse of your health data” aimed at raising awareness and engaging the discussion with and between citizens on the use of health data beyond individual care. The ideas and opinions expressed by citizens during this e-consultation fed into recommendations on how to sensitise citizens to and engage them with the reuse of their health data in a Belgian as well as European perspective. 

The preliminary work to prepare this project highlighted the general lack of clarity for citizens regarding the use of health data for purposes beyond individual care, including over their own rights and the existing safeguards. The Healthy Data e-consultation offered citizens a place to inform and express themselves, as well as a space to debate over the second life of their health data and the role that they could play in it. The specificity of this consultation was that it offered citizens an open discussion platform where they could exchange with other participants on the second life of our health data. 

Organized by Sciensano (Belgium), the Health Data Hub (France) and the NHS Confederation (United Kingdom), this e-consultation was available in French, Dutch and English and accessible to any European citizen willing to participate. This project was being carried out within the framework of the European Joint Action “Towards a European Health Data Space” (TEHDAS) and also the Belgian initiative “Towards the development of a National Health Data Platform” (AHEAD) which similarly aimed at facilitating the use of health data for improving health, care and services through research and planning, in Belgium. The ideas and opinions expressed by citizens during this e-consultation fed into recommendations on how to sensitise citizens to and engage them with the re-use of their health data in a European perspective. They were delivered to the EU commission and contributed to the structuration of health data use and sharing policies and practices in Europe. 

Read more about Healthy Data

Technical Information

Work Programme United Action in the field of Health 2020
Type of Action Joint Action
Budget EU Third Health Programme *
Lead Coordinator Finnish Innovation Fund Sitra

*The Healthy Data consultation, from its design to the publication of the recommendations, was co-funded between the EU Third Health Programme and the AHEAD project. 

Related Projects

  • InfAct : Joint Action on Health Information
  • PHIRI : Population Health Information Research Infrastructure
  • EGI-ACE: Advanced Computing for European Open Science Cloud (EOSC)
  • EHDS: European Health Data Space was developed and published after the European Joint Action TEHDAS was set up, to help member states and the commission in the building of the EHDS
  • Healthy cloud: is one example of how the EHDS could be implemented (cloud-based solution). It has been set up before the EHDS.
     

 Contact us

More information on the TEHDAS project website

Sciensano's project investigator(s):

Service(s) working on this project

Partners

Financial Source

Associated Health Topics

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