Participation to our consultation has ended. Between December 2021 and May 2022, our platform received more than 24,500 visits and we collected almost 6,000 contributions. We warmly thank all the citizens who participated in this debate, as well as all the partners who supported us during this process. Since then, we have analysed your ideas and published our interim report on the citizens' contributions.
Most participants recognised the societal benefits of sharing health data, such as improving public health, but remained concerned about the potential risks associated with its use, particularly regarding breaches of their privacy. A key requirement for citizens is therefore to achieve a balance between the benefits and risks of re-using health data.
Amongst other things, the purpose of reuse seems to have a major impact on citizens' preferences, notably through the guarantee that their data is used in the public interest, whether through research or the implementation of public policies. Nevertheless, some aspects clearly divide citizens. Indeed, their opinions differ as to the possibility of pursuing a commercial purpose or allowing access to data to commercial actors, and also as to the need to anonymise data or not.
Finally, the need for information and transparency is a recurrent statement in your ideas. This, together with the need to have a solid general framework in place, would help to build confidence among participants in the re-use of health data.
What is the place of citizens in this framework? Many of you have commented on this question, with extremely diverse answers. What remains certain is that public trust depends on respect for the values promoted by citizens in the framework put in place. Beyond a concrete choice of commitment by citizens, they wish to be perceived as real actors and partners in the re-use of their health data, whether through policy decision-making processes or the governance of their data.
The aim of the Healthy Data project is to provide guidance on how to engage citizens in the future European Health Data Space, the first proposal of which was published in early May. In order to transform the contributions we have collected into concrete recommendations, we want to get feedback from stakeholders in the health data ecosystem through a series of workshops:
Thanks to the perspectives of these actors, and based on our preliminary work and the contributions of citizens, we will be able to formulate these recommendations in the course of the end of the year, in order to be able to present them to the European Commission in February, in 2023.
Follow Robert and his health data on their trip. How does Robert's health data move along with him? And how can his health data be reused?
14-10-2022 Since the publication of our interim report outlining the 6,000 contributions collected from citizens, the Healthy Data team has organised a ser [...] Read more
22-09-2022 Over the last few days, the Healthy Data team has conducted three national workshops in the participating countries of the project, namely Franc [...] Read more