Support Centre

You have out of 5 free articles left for the month

Signup for a trial to access unlimited content.

Start Trial

Continue reading on DataGuidance with:

Free Member

Limited Articles

Create an account to continue accessing select articles, resources, and guidance notes.

Free Trial

Unlimited Access

Start your free trial to access unlimited articles, resources, guidance notes, and workspaces.

France: CNIL publishes recommendation on National Health Data System registry

On June 24, 2024, the French data protection authority (CNIL) published recommendations on health data and the National Health Data System (SNDS). CNIL clarified that the recommendations build on a guide published in 2020 concerning the registration with the SNDS and public or private organizations carrying out health research.

CNIL outlined that the new recommendations consider the directory registration number (NIR) which is present on letters, documents, samples, and medical reports, as a public identifier. Likewise, all communications must be secure, using authentication measures and encryption compliant with the state of the art.

Regarding public identifiers more specifically, CNIL noted that the NIR must only be stored at a single source location or at a centralizing third party, for the duration of the inclusion of patients and the matching of health data with the SNDS. The NIR must also be stored and encrypted, and not travel with health data when transmitted. More specifically, any identifiers used for data storage must not be transmitted with the NIR, as two identifiers pose a high risk of identification. Third parties must also not have access to data stored by centers, and have no other personal data related to a health survey sent to them.

You can read the press release and recommendations here and the quick guide here, both only available in French.