DNS Citizens' Committee
© Ronan James, DGEFP

Citizens' Committee for Digital Health: Involving citizens in the management of health data

Client: Ministerial Delegation for Digital Health
2024
Context

In 2024, the French Ministerial Delegation for Digital Health (DNS) asked Res publica to organize a third season of the Citizens' Committee for Digital Health, again focusing on health data, but with a broader scope.

This delegation is responsible for implementing the European regulation on health data in France. This regulation aims to establish a European Health Data Space (EHDS) and is part of the European digital strategy, which is designed to ensure the European Union maintains control over its data. The regulation includes several components, one of which addresses the secondary use of health data, meaning the use of this data for purposes other than healthcare (particularly for research). This second component raises a number of questions and difficulties given the highly sensitive nature of health data. The

Citizens' Committee, composed of 31 randomly selected individuals representative of the French population, aimed to answer the question: " Within the framework of integrating the European regulation on health data into French law, what rules and implementation conditions specific to France will ensure the proper use of this data while fostering public trust?" The

The citizens' opinion was presented at the 4th edition of the Citizens' Conference on Digital Health on January 22, 2025.

Missions
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