This Healthy Data report discusses 12 recommendations for the European Commission on how to engage citizens in the second life of their health data.
Two years ago, the Healthy Data project was launched, within the framework of the TEHDAS Joint Action. The goal was to better understand the perceptions of European citizens towards the second life of their health data and how they would like to be involved in the future governance of this data. To this end, the Healthy Data platform was created to share informative content with citizens on these issues and allow them to contribute their thoughts and ideas.
These recommendations were built on the nearly 6,000 contributions shared on the Healthy Data platform and through an interactive quiz. They were also based on preliminary work and stakeholders’ inputs provided through four workshops conducted after the publication of the consultation’s results. They took into account the current legislative proposal for a European Health Data Space, released by the European Commission last year.
Among the recommendations, several highlight the need for clear and straightforward access of citizens to information about the secondary use of health data, enabling them to become more engaged. Citizens also emphasized the importance of stakeholders respecting principles that align with their ethical values.
Healthy Data suggests:
"As a stakeholder in the health data ecosystem, this is your opportunity to learn about the principles that contributors to this report have identified as important in this context. You can assess whether these resonate with what you perceive in your respective fields of expertise, and whether they can help you better understand citizens' views on the secondary use of their health data."
Download and read the report here.
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If you want to get into more details on this topic, have a look at the summary of Session 6 of the 2022 Symposium.