The implementation of the delayed health data mega file

The authorization request filed by the controversial French health data platform, or Health Data Hub, which was to allow it to bring together medical information from the main existing public databases was withdrawn at the end of December, said Monday, delaying its release. Implementation.

“The authorization request addressed to the CNIL concerned the centralization, within the Health Data Platform, of data from the SNDS (National Health Data System) as well as the catalog” (which includes third-party data sources) , specified the National Commission for Data Protection, confirming information from La Tribune, NextInpact, and TicPharma.

A temporary withdrawal

Created in July 2019, the Health Data Hub is a public interest group that aims to build a gigantic digital warehouse bringing together French health data, in order to facilitate their reuse, in particular for medical research. Faced with concerns about the confidentiality of this very sensitive data, the government had undertaken to seek authorization from the regulator.

The withdrawal of the authorization request was made in “agreement with the Ministry of Solidarity and Health”, and it is only temporary, said the director of the Health Data Hub Stéphanie Combes in a statement sent Monday evening . According to the organization, the withdrawal is above all technical, “pending the finalization of the instruction by the CNIL of the decree defining the composition” of the databases which must be grouped together.

The choice of the supplier in question

The CNIL refers for its part to the Ministry of Health, which must provide “additional information” to enable it to complete its instruction. “The two cases are intimately linked and (…) their investigation in parallel (…) is preferable”, indicated the Commission. Contacted, the Ministry of Health did not respond to the requests on Monday. Anyway, the episode delays the implementation of the main site of the Health Data Hub.

According to Stéphanie Combes, “around ten projects are already accessing or are about to access the technological platform”, but for each project, the data requested must be the subject of an authorization request and an extraction. by the producer, which lengthens the deadlines, she explained.

The CNIL has repeatedly criticized the organization and the technical choices made for setting up the Health Data Hub and the SNDS. In particular, it opposed the choice of Microsoft’s Azure cloud solution to host this sensitive data. The government has since made a commitment that the platform will return quickly to a European cloud provider.