As the Health Data Hub celebrates its third anniversary, its first roadmap is coming to an end. As a member of the “Health Data Platform” public interest group, France Assos Santé has participated in several outcomes of the Health Data Hub. It is in fact a real partnership between the two structures with a year 2022 full of collaborations with a dozen city projects including:
- The VivreCovid19 study, which has been documenting user experience during the health crisis since May 2020, bringing together 13 associations with Health Data Hub and Sanoia, has entered a new dimension with the signing of a multi-party agreement with Santé Publique France for the analysis of 2.5 million data collected, a commitment made two years ago in the ethical doctrine of the study. The new approach of this study was also rewarded with an event in May 2022, entitled “French Presidency of the European Union”.
- In their missions of listening to citizens and informing, a barometer of knowledge on health data was launched which highlighted the desire of citizens to be better informed about health data, their rights and what is achieved thanks to data, in particularly in the field of research. These results confirm the projects undertaken and allow us to direct our actions, a citizen newsletter has been launched and the experimentation of a user awareness project with the assistance of the University Hospital of Rouen and the Normandy Datalab.
- Concerning health democracy, we have jointly launched a consultation on user representation in committees dealing with health data and more specifically in health data warehouses. This approach combines the respective expertise of France Assos Santé and the Health Data Hub, which supports the development of these structures particularly at the hospital level, and will lead by early 2023 to co-constructed results and recommendations with users and professionals.
The year that begins will therefore see the continuation of the actions started and new projects will see the light. In particular, it will be a consensus conference and two service projects, one focused on information and the exercise of rights that citizens have in relation to health data, and the other for a single support service for associations for access to summary data from the National Health Insurance Data System.
