But what about the Health Data Hub?

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The authorization request made by the government to the CNIL for the Health Data Hub has been withdrawn. A stoppage of this project to centralize the health data of French women and men. The news has been successfully announced by the Twitter account of the InterHop collective this Friday, January 7, 2022: the government withdrew the application for the deployment of the Health Data Hub made to the National Informatics Commission and Freedoms (Cnil). Information confirmed to Numerama the same evening by the digital police. A brake, but the existence of this health data warehouse is not in doubt. A project to centralize French health data The Health Data Hub is a titanic project to centralize French health data in a single data warehouse. Launched at the start of Emmanuel Macron’s five-year term, its aim is to be able, in the long term, to cross-reference different databases for research purposes. Medical-administrative data first, then genomic, clinical, hospital, etc. The idea of ​​a health data center was first formulated in the report on artificial intelligence of the former deputy of LREM Cédric Villani published in 2018. The deployment of the project then began in 2019, with the horizon of an implementation in 2022. With the Covid-19 Pandemic, the measures of the health emergency state law also make it possible to accelerate the Health Data Hub and incorporate data from the epidemic. Marginal operation at the moment The project is therefore already partially underway. As the Health Data Hub explained on its site in a press release published on December 23, 2021, in the two years since its launch, “Health Data Hub currently supports 55 projects and about ten are accessing or in point of access”. the technological platform. If the first projects are not yet mature enough to bring a concrete benefit in patient care to date, the first significant steps have been taken. Behind the linguistic elements, the Health Data Hub is not yet the data warehouse it wants to become. It is this request to Cnil – precisely the one that has been withdrawn – that allowed him to have the means for his ambitions: to centralize as much health data as possible. First, data from the National Health Data System (SNDS). A database that includes data from the Health Insurance, hospital data, medical causes of death with data from the Inserm and finally data relating to the disability of the Departmental Centers for Persons with Disabilities (MDPH) and data from the National Fund for Solidarity for Autonomy (CNSA). Just that. Also other databases, today less accessible, that the Health Data Hub includes under the name “catalogue”. According to information from the specialized medium TICpharma, 43 more bases were expected to be added to the warehouse according to a list that is not yet final. As the Health Data Hub site specifies, the final list must be set by an order, yet to be published. But to put it simply, the Health Data Hub is currently just an exchange for certain databases, which only about a dozen projects (again according to the Health Data Hub site) or so to success. There are, for example, only 3 databases in the “catalog”, which therefore expects to contain 40 more. The fact that Cnil’s request has been withdrawn therefore puts a brake on the development of the project, which its director, however, describes on Twitter as “perfectly alive”. Fears and criticism of data hosting As Cnil has confirmed to the specialized medium Mind Health, the request was even withdrawn earlier by the Ministry of Health, on December 20, 2021. How to understand this choice by the government ? Adrien Parrot is anesthesiologist and computer scientist, founding member of InterHop. A collective that brings together various players in the world of IT in the hospital sector, and that has been campaigning for years against certain ways of launching the Health Data Hub. Adrien Parrot interprets this withdrawal as “linked, a priori, to the political context. The elections are approaching and the issue is rising, there is a lot of talk about data protection. […] But also because risking a denial of Cnil authorization for the project as it is is a real political risk”. A risk of rejection that was far from a fantasy because a technical point of the Health Data Hub has been criticized since the beginning of the project: the choice of an American host, Microsoft Azure, for storage of this health data. Even if the servers are to be in Europe, in the Netherlands, the data export risk posed by US law, in particular with respect to the transfer of information to US soil permitted by the Foreign Intelligence Surveillance Act (Fisa) and Executive Order 12 333, which even concerned the Cnil in its observations provided to the Council of State. In a notice published on February 9, 2021, the digital policeman explains “its desire that its hosting and the services related to its management can be reserved to entities that belong exclusively to the jurisdictions of the European Union”, basing- se, in particular, in the risks it entails. for the hosting of health data by an American company such as Microsoft Azure. Cédric O confirmed this Thursday, January 20, 2022 that the choice of a host for the Health Data Hub that is not subject to US law will not be made “not before the presidential election”. Therefore, the decision is postponed to the second semester of 2022. This leaves little room to fulfill the commitment made (in a letter addressed to the Cnil) by the Minister of Health Olivier Veran in November 2020 to end the hosting of the project by Microsoft in two years. Update January 13, 2022: Correction of US laws on transfer of information to US soil Update January 13, 2022 16:25: Added clarification on the basis of the “catalog” with information from TICpharma Update January 20, 2022: Addition of statements by Cédric O
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