Check our recommendations for the European Commission !
Two years after its launch, the Healthy Data project is coming to an end. Over the last few months, our team has been working on our final deliverable within the TEHDAS project: 12 recommendations for the European Commission relaying citizens' key values about the second life of their data and their preferences on how to engage them in the future European Health Data Space. These recommendations were built on the nearly 6000 contributions you have shared on our platform and through our interactive quiz, as well as on other preliminary work and stakeholders’ inputs provided through 4 workshops conducted after the publication of the consultation’s results. They also took into account the current legislative proposal for a European Health Data Space, released by the European Commission last year. What are the recommendations in a nutshell? The first part of our recommendations builds on the premise that according to citizens, using data means using a part of their identity and history. Therefore, when using data for secondary purposes stakeholders have to bear in mind that they are entering a relationship between citizens and their data. This part expands then on how to develop and support the different elements constituting the relationship between data, citizens and stakeholders involved in the second life of data. The second part begins with reminding that citizens perceive data as having a certain power, to do good but also to do harm. This part then deals with citizen-supported mechanisms to ensure the balance between risk mitigation and benefit maximisation when using data. The third part of the recommendations develops on the necessity to bring together all of the above into a dynamic regulatory framework driven by citizens, taking into account the core ethical values they identify. A fourth part mirrors the values and principles which should guide the secondary use of health data according to citizens with the current proposal of the European Health Data Space. Read the one-pager here! Read the full report here! What happens next? Following the publication of this final report on the TEHDAS website, the European Commission will have knowledge of and access to this document. This is an opportunity to make the values of citizens heard at the genesis of the European Health Data Space. In parallel, our team will conduct a communication and dissemination campaign of the recommendations to all partners who have been involved at some point in the project, as well as to additional policy makers. You can always follow us on the channels shared below: Sciensano (Belgium): Twitter LinkedIn Health Data Hub (France): Twitter LinkedIn Understanding Patient Data (UK): Twitter Youtube Although our team members will no longer be directly involved in the TEHDAS project, we happily remain available to answer your questions and keep the dialogue open. Sciensano: email@example.com Health Data Hub: firstname.lastname@example.org NHS Confederation: James.Maddocks@nhsconfed.org