Context

In 2024, the Délégation ministérielle du numérique en santé (DNS) asked Res publica to organize a 3rd season of the Comité citoyen du numérique en santé, still on the subject of health data, but with a broader focus.

Indeed, this delegation is in charge of implementing the European regulation on health data in France. The aim of this regulation is to establish a European Health Data Space (EHDS), as part of the European digital strategy to ensure that the European Union has control over its data. The regulation covers a number of areas, including the secondary use of health data, i.e. the use of data for purposes other than healthcare (notably research). This second aspect raises all kinds of questions and difficulties, given the highly sensitive nature of health data.

The Citizen's Committee, made up of 31 people representative of the French population selected by lot, was tasked with answering the question: " In the context of incorporating the European regulation on health data into French law, what are the rules and conditions of implementation specific to France that will enable proper use of this data while generating citizen confidence?"

Members of the Citizen's Committee heard from specialists in digital health data, researchers, representatives from other European countries (Germany, Belgium, Estonia, Finland) and business representatives.

The citizen's opinion was presented at the 4th Assises citoyennes du numérique en santé on January 22, 2025.

Missions

• Design the training program and work methods for the 3 weekends

• Composition and recruitment of committee members

• Design of the collaborative dialogue process