Healthy Data

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: louise.mathieu@sciensano.be   Health Data Hub: kenann.menager@health-data-hub.fr  NHS Confederation: James.Maddocks@nhsconfed.org 

Our series of workshop ended: 150 European stakeholders came to help us build our final recommendations based on citizens' contributions Since the publication of our interim report outlining the 6,000 contributions collected from citizens, the Healthy Data team has organised a series of workshops to meet national and European stakeholders. Our aim was to discuss the secondary use of health data in-depth and to get their feedback on the citizens' contributions in order to better delineate the main areas to focus on and to clarify the best way to develop our future recommendations. More information on the national workshops is available here. The European workshop was organised in a hybrid format at the Hungarian Permanent Representation in Brussels. More than 50 stakeholders participated in the face-to-face workshop, and more than 100 followed us online. Once again, we would like to express our gratitude to the members of the Permanent Representation for hosting us, as well as to all stakeholders for participating in person and online. How did the workshop go? During the two-hour workshop, participants were given an overview of the European Commission's proposal for a European Health Data Space, the TEHDAS joint action and the process followed to conduct the Healthy Data consultation and its main outcomes. We then presented them with several statements from the citizens' contributions, organised under three main themes: benefits, conditions and citizens' engagement regarding the secondary use of health data. Both online and in person, participants were able to vote on the statements, write their comments in the chat room, or intervene directly if they were present. The discussion hold during the workshop was very fruitful, thanks to the multiple interventions and comments received from the audience. For more information:  Find the slides here, Access the recording here Read the summary of the discussion here And now?  We are now in the final phase of our project, and will start writing our final deliverable for the European Commission on how to raise awareness and engage citizens in the future European Health Data Space. 

Over the last few days, the Healthy Data team has conducted three national workshops in the participating countries of the project, namely France, Belgium and the UK. On this occasion, we were able to present the main results of the consultation to the national stakeholders of the health data eco-system in each country, such as digital experts, health professionals, researchers, patient associations and civil society actors. In total, nearly one hundred stakeholders attended  the three consecutive workshops. We would like to thank all the participants for taking the time to listen, discuss and contribute during the workshop.  What did we discuss? We had the opportunity to discuss different major themes in order to feed our reflection on the recommendations we will elaborate for the European Commission on citizens' engagement in the future European Health Data Space. These main themes were the following:  Conceptual framework: how can citizens' conceptions of health data influence the framework for their re-use? Collaboration: how to treat citizens as equal partners in the re-use of health data? What roles do different stakeholders play and how can we maximise collaboration? Trust and beneficence: how to foster trust and beneficence of citizens towards health data reuse (safeguards, actions, information...)?    In order to have a more detailed idea of the content of the discussions held during these workshops, you can consult the summaries made for each workshop below:  Workshop conducted in Belgium Workshop conducted in France Workshop conducted in the UK Where do we go from here?  The results of our consultation and the points highlighted during these national workshops have been presented to European stakeholders during a hybrid European workshop organized at the Hungarian Permanent Representation in Brussels on 11 October. More information on the European workshop here.