This project brings together two initiatives which aim at facilitating the access and use of health data to improve health, care and services through research and planning. The two initatives are:
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.
The preliminary stages of the project showed that there was a general lack of clarity for citizens regarding the reuse of health data for purposes beyond individual care. Our inital research on citizens' perceptions and involvement with health data also highlighted the very limited number of existing consultations conducted on the topic among European populations. We therefore committed to two overarching project aims:
The Healthy Data e-consultation has been constructed based on these two aims. To reach them, the iCitizen team has partnered with the AHEAD project team, whose main missions is to identify legal, technical and ethical bottlenecks that hamper the linkage, reuse and scientific exploitation of health data through consultation with Belgian citizens.
We commit to respecting the following principles
You would like to know more about our objectives, our methods and the expected results of this e-consultation? Click here to discover everything about our project!