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New National Institute for Health Data responsible for access to health data in France

The National Institute for Health Data (INDS) was established by an order dated 20 April 2017. The INDS replaces the Institute for Health Data and will serve as a one-stop-shop window through which access to the National System of Health Data (SNDS) database, which incorporates most public registries of health data, must be requested (see previous update National System of Health Data increases access to health data in France).

The INDS framework agreement sets out, in particular, five goals:

  • Ensure quality, safety and accessibility of health data.
  • Function as a one-stop-shop window for access requests to data for research, study or evaluation purposes.
  • Issue opinions on the public interest character of such research.
  • Provide samples or aggregated data derived from health data processed under the terms set out by National Commission on Informatics and Liberties (CNIL).
  • Contribute towards expressing the needs for anonymous data and statistical results in order to make them publicly available).

In addition, the framework agreement focuses on governance terms concerning membership (enrolment, exclusion and withdrawal), general meetings and the executive board (composition, competences), missions of the public interest advisory committee, such as advising on the public interest of research, studies or evaluations, and advising the INDS when the latter is required to issue an opinion on the public interest of a specific dossier and on any other ethical issues.

Four hospital federations have refused to join the INDS as the system does not, in contrast with certain public bodies, grant them permanent access to health data.

A prior version of this post was originally published by the same authors in Practical Law – Life Sciences, May 2017 Issue (Thomson Reuters).

This post was originally authored by Patricia Carmona Botana.

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