Implementation of the Health Data Hub health data mega-file delayed

The controversial French health data platform, or Health Data Hub, withdrew an authorization request at the end of December that was to allow it to bring together medical information from the main existing public databases, the National Commission for Health said on January 10. data processing and freedoms (CNIL) to AFP, delaying its implementation.

“The authorization request addressed to the CNIL concerned the centralization, within the health data platform, of the data from the SNDS [Système national des données de santé] as well as the catalog[qui inclue des sources de données tierces]”, Specified the CNIL, confirming information from The gallery, NextInpact, and TicPharma.

Created in July 2019, the Health Data Hub is a public interest group that aims to build a gigantic warehouse bringing together the health data of French people, 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.

In a statement to the TicPharma news site, the director of the organization Stéphanie Combes explained that the withdrawal of the authorization request was made in “agreement with the Ministry of Solidarity and Health”, and that it is only temporary. Stéphanie Combes and the Ministry of Health did not respond to AFP’s requests.

The withdrawal of this file, which was being investigated by the CNIL, delays the establishment 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 extends the delays, she told TicPharma.

The CNIL has repeatedly criticized the organization and the technical choices made for the establishment of 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 supplier. cloud European.

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