Stopping the Health Data Hub, the controversial platform that centralizes French health data

Le ministre de la Santé, Olivier Véran.

Has the State just put the first nail in the coffin of the Health Data Hub, this great platform that should bring together most of the health data of the French to help research? In any case, this is what follows from his spectacular decision to withdraw his request for authorization to operate from the National Commission for Information Technology and Freedoms (Cnil). The personal data police has confirmed to La Tribune the information revealed in the afternoon on Twitter by InterHop, association for the promotion of free software and fervent opponent of the Health Data Hub. “The request for authorization sent to the CNIL concerned the centralization, within the Health Data Platform (HDH), of data from the National Health Data System (SNDS). In fact, this request has been withdrawn” , indicates the institution. “Burying the Health Data Hub without really burying it” Specifically, this withdrawal of the essential authorization request from the CNIL is the way the State has found to discreetly disconnect the shameful Health Data Hub. “It’s burying it without really burying it, cleaning up an explosive situation to start anew with a good base”, says Mòdem deputy Philippe Latombe, a great expert on the subject. Contrary to what InterHop has deduced on Twitter, this does not mean that the Health Data Hub is closing: “The Health Data Hub still exists legally but remains in pilot mode. Without the authorization of the Cnil it cannot operate in a complete way. and in a normal way, so there can only be pilot projects, very limited and very controlled,” he said. Contacted by La Tribune, the Health Data Hub confirms this fact. “The HDH currently supports 55 projects with its partners and a dozen already access, or are about to access in the coming days, the technological platform. HDH also continues its program of work with health facilities to explore methods of coordination. between local, interregional and national initiatives. The European Medicines Agency also selected a consortium created in July to build a multicentre, clinical and medico-administrative database to analyze the side effects of drugs. HDH is also a partner in a city medicine data warehouse project,” the structure details. The fateful choice to entrust data hosting to Microsoft The hotly contested Health Data Hub (HDH) platform, gathers large volumes of data, some of it highly sensitive, from public health organizations to make available to hand-picked research projects But it’s not its mission that poses a problem: from the since its inception, the project has been mired in endless controversy over its IT infrastructure. In fact, the State has chosen to entrust the HDH data hosting to Microsoft’s Azure solution, without calling for tenders. For Cédric Or, the Secretary of State for Digital Transition, Microsoft was simply the only player capable of hosting such sensitive data securely and running machine learning algorithms (a method of artificial intelligence) sufficiently powerful enough to exploit them for research a. An argument contested by the French cloud ecosystem, which also denounces an aberrant choice in terms of legal data security – Microsoft is subject to US extraterritorial laws – and France’s technological sovereignty. The Cnil and the National Information Systems Security Agency (Anssi), in particular, had joined the concert of criticism. The case was even brought to the Council of State in October 2020. The latter had undoubtedly opposed the suspension of the Health Data Hub requested by its many opponents, but had recognized “a risk to the possible transfer of health data in the United States.” States” and called for a “lasting solution”, i.e. without Microsoft. In the process, Cédric O and the Minister of Health, Olivier Véran, had committed to the Cnil and parliamentarians to withdraw the data hosting of Microsoft “within a maximum period of two years”, so at the end of 2022. In a column published on the website Le Monde and published on November 18, the president of the Circle of State Reform, Christian Babusiaux, underlined the “impasse” that the Health Data Hub finds itself in. Especially since the controversies prevent the platform from receiving Health Insurance data that should be a real asset for French health research and industrialists. The blue cloud of trust , a mirage for the Heath Data Hub To get out of this mess, the state thought it had found a miraculous solution in 2021: its “cloud at the center” strategy, unveiled last May. French administrations and strategic companies are benefit from a sovereign and efficient cloud, without cutting themselves off from the American technologies that are flooding the market. The trick: using American software but that would be owned by a French joint venture hosted in France. The first of these joint ventures was announced just days after the strategy: it was Bleu, consisting of Microsoft technologies hosted by Orange and Capgemini. “The Health Data Hub hadn’t foreseen the possibility of migration, so technically they were stuck with Microsoft, their coding had been done in Azure databases, a source tells us. Bleu represented the hope of a solution because as Microsoft provides the technology, there was no need to redesign the platform.” Problem: Blue isn’t about to see the light of day yet. And the time planned by Olivier Véran and Cédric O to migrate the Heath Data Hub to Bleu, the only possible solution, seems unsustainable. “Orange and Capgemini have a lot of trouble working together for data storage, and Microsoft has specific specifications for executing their orders. Specifically, Bleu is stuck. It will be difficult for him to provide an equivalent quality service only in the cloud of Microsoft.” continues our source. What future for the Health Data Hub? In his column for Le Monde, Christian Babusiaux calls on France to “break out of the impasse” of the Health Data Hub. “European industrialists are ready to take over to create a new platform around a renewed governance that would avoid making decisions in the future that lead to predictable blockages”, thunders. And to continue: “If France has been able to build one of the databases largest in the world (the national health data system), is also able, with European partners, to host and operate it according to the state of the art. of new technologies”, he says. For deputy Philippe Latombe, the reform of the Health Data Hub could be inspired by Ouest Datahub, the first hospital data platform in Europe, which allows to group anonymous data from six hospitals (including the University Hospitals of Nantes, Rennes and Angers) in the medical research service. No one knows yet what choice the government will make. Be that as it may, this decision is also political. A few months before the presidential election, Emmanuel Macron does not want the Health Data Hub scandal to come back to haunt him during the campaign, so he is making sure to clear the ground by emptying the bottom and launching a total overhaul of ‘a project presented nevertheless as a showcase of French innovation in the field of health.
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