About the Healthy Data e-consultation

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:

  • the Belgian project “Towards the development of a national health data platform” (AHEAD)
  • the European initiative “Towards a European Health Data Space” (TEHDAS).

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: 

  • to listen to citizens and patients’ views on health data secondary use and sharing and on the role, if any, that they would like to play in the management and use of their related health data.  
  • to increase citizen awareness, engagement and empowerment on the topic, so that everyone can, if they chose, develop informed opinions and take an active role in the use of their health data. 

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.   

Our commitments  

We commit to respecting the following principles  

  • Remain neutral in the information materials we provide, the questions posed to citizens and the analysis of their contributions  
  • Inform the participants to provide them the tools needed to develop informed opinions and take an active role in the use of their health data. 
  • Listen to what citizens and patients have to say using various communication methods, including an interactive test and an open discussion platform.  
  • Be fully transparent on our approach, including on our objectives, methodology, their limits, and the expected results
  • Provide feedback to the participants on the value of their contribution
  • Ensure the confidentiality of all personal data collected on the website
  • Take into account citizens' input in the final recommendations for the European Health Data Space on citizens’ sensitization to and involvement with health data secondary use and sharing

Our methodology  

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!