“It’s time to save the soldier Health Data Hub”

Tribune. Opinions published in the press and in particular one from the Scientific Advisory Board of the Health Data Hub (HDH) in The world of October 20 (“Health data serves the public interest, it is urgent to facilitate access”) legitimately sound the alarm on the difficulties encountered by this structure in its operation, with the corollary for the research, obstacles in access to health data, a major public health issue.

These texts do not explain the nature of these difficulties and their reason, however essential to the understanding of the events, controversies and blockages which have multiplied around the HDH since its creation, it is important to explain their origin in order to measure the stakes.

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First of all, as described by its Scientific Council, it is clear that the progress made by the HDH since it was born from a transformation of the National Institute of Health Data (INDS) in 2019, are very below the expectations then displayed for public health and in financial terms – the objective, moreover limited in relation to more than 200 billion in health expenditure, was 90 million euros in savings (compared to almost as much expenditure) if the HDH became operational, as rightly indicated an article from TIC Pharma from October 18.

Research projects have certainly been selected by the HDH but, except for a small number, they remain a dead letter. Why ? First because of the lack of data. In particular because the databases contained in the National Health Data System (SNDS), managed by the National Health Insurance Fund (CNAM) and which groups together hospital, city and cause data have not been transferred to it. medical deaths of all French people with a history of more than ten years today.

A tough fight

While access to health data has always been a difficult battle, the HDH’s initial choice to entrust the hosting and operation of all French health data to Microsoft’s Azure “cloud”, without appeal. offers, accentuated the difficulties.

This choice indeed poses problems of personal data protection, industrial sovereignty and legal security on which the groups and many public actors had alerted – the National Commission for Informatics and Freedoms (CNIL) and the National Agency. information systems security (Anssi) -, civil society – in particular the CNAM Council representing the social partners -, manufacturers, and parliamentarians.

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