Despite the concerns, the Health Data Hub is officially launched

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"We need to work together to create the conditions for the development of artificial intelligence in health. That's why we wanted to build a health data platform", said Health Minister Agnès Buzyn, at an event dedicated to the subject on November 18, 2019. It is now done: the first version of the" Health Data Hub "- announced by Emmanuel Macron following the Villani report – has been operational since the publication of the decree of 1 December 2019 who sets the conditions.

The creation of this tool meets the goal of the French government to promote the development of AI in the field of health. However, it is impossible to meet this ambition without making health data easily accessible to all, all the time. This platform therefore aims to promote the use and multiplication of the possibilities of exploiting this data, particularly in the areas of research, in support of health personnel, the steering of the health system, monitoring and informing patients.

Creating a data catalog

In concrete terms, this tool will complement the National Health Data System (NSDS) created in 2016. This platform contains data on health insurance, hospital billings, medical causes of death, medico-social data from hospitals and hospitals. persons with disabilities and a sample of reimbursement data from complementary organizations. This kind of catalog will draw the data needed to launch research. Public research centers but also private actors may submit their application for access to the platform on condition of project of general interest and after authorization of the National Commission for Informatics and Liberties (Cnil).

Several projects have already been selected by the Ministry of Health. They will then be able to use the platform to develop medical innovations. "Deepsarc" is about studying the impact of treatments on real-life data in order to define relevant and effective treatment regimens for sarcoma (a rare tumor that responds poorly to clinical trials). "Hydro" is planning to develop a solution to prevent heart failure attacks for patients with pacemakers by analyzing AI telemonitoring data.

Platform hosting worries

The platform, which gathers very sensitive data, raises several concerns. "The ambition of the Health Data Hub is to make available to the plan a large number of our data assets in anonymized form in respect of the ethics and fundamental rights of citizensAgnès Buzyn reminds us that for information to be stored on this platform, its structure must be modified to make it very difficult to identify.

But it is the hosting of Health Data Hub that crystallizes the critics. The first phase of the project is based on Microsoft's cloud data hosting service. This choice was almost immediate because, at the end of 2018, the American company was certified as "health data host"In France, this was not the case for its competitor OVH, but this choice goes bad, especially since the adoption of the" Cloud Act "by the US Congress.

This law allows US law enforcement agencies or intelligence agencies to obtain information from telecom operators and cloud computing providers stored on their servers. Service providers must communicate "the electronic communications contents and any recordings or other information relating to a customer or subscriber, which are in their possession or in their custody or control, whether such communications, recordings or other information are located within or outside United StatesThis means that an American intelligence agency could legally recover health data from a French citizen without its consent, a problematic situation with regard to the principles laid down in the General Data Protection Regulation (GDPR). But the Government has not yet responded to these legitimate concerns.

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