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Final Report on how to engage citizens in the second life of their health data - future European Health Data Space

Published on | 2 years ago

Programmes Health AI Continent

Within the framework of the TEHDAS Joint Action, co-funded by the EU4Health programme, the Health Data project was launched in 2021. The projects aims to better understand the perceptions of European citizens towards the second life of their health data and their preferences on how to engage them in the future European Health Data Space. To this end, the Healthy Data platform was created to allow citizens to contribute their thoughts and ideas. The project has collected almost 6,000 contributions, and the site has had more than 35,000 visits to date.

The team behind the Health Data project has now published the final report from the Healthy Data Consultation. It discusses 12 recommendations for the European Commission on how to engage citizens in the second life of their health data. This report allows stakeholders in the health data ecosystem to learn about the values that contributers have identified as important. Read all about it here.

Background: TEHDAS is the Joint Action Towards the European Health Data Space. Within TEHDAS, Sciensano (Belgium) the Health Data Hub (France) and the NHS Confederation (United Kingdom) compose the working group iCitizen, which has been set up to provide recommendations on the role of citizens in the future European Health Data Space, particularly on the involvement of patients, citizens, and their representatives on the reuse of health data for purposes beyond individual care.

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