As part of the World Day for Safety and Health at Work, Forecasting.ai takes a look back at the Health Data Hub, a collaborative project that raises questions.
Health Data Hub (HDH) is an initiative of the French government born in 2019 to collect health data from different actors (public and private). The two main objectives of the project are: on the one hand, to cross-reference patient data in order to prescribe the best treatment. On the other hand, to use this large amount of data in research to make new scientific advances. An ambitious and commendable project, but the hypersensitive nature of French medical data makes it the object of intense surveillance and the covetousness of many observers.
The Health Data Center is a titanic project to centralize the health data of the French population in a single data repository. Launched at the beginning of Emmanuel Macron's five-year term, it aims to enable the cross-use of different databases for research purposes. First, medico-administrative data, then genomic, clinical and hospital data, etc.
The idea of the Health Data Center was first formulated in a 2018 report on artificial intelligence by former LREM deputy Cédric Villani. The project's rollout will begin in 2019, with a final date in 2022. With the Covid-19 pandemic, measures in the Health Emergencies Act also accelerate the Health Data Center and include data on the epidemic.
Curious technology choices
A project of this magnitude, spanning several years, could do the business of many technology providers. In France, in principle, any project open to public order must go through a rigorous bidding process. But in the case of HDH, the Ministry of Health has not announced any call for tenders, either European or national.
Worse, thishe project to centralize several large French medical databases for research purposes has been controversial since its creation in 2019 because of its digital technology provider, Microsoft. The latter, as an American company, is subject to U.S. extraterritorial law, which could allow authorities to access the data. The government has therefore promised to hand it over to a French or European player, after the French National Commission for Information Technology and Civil Liberties (CNIL) and a ruling by the Court of Justice of the European Union recommended doing so in mid-2020.
But since then, the state and the government seem to want to put the brakes on. The government's request for authorization from the CNIL for the Health Data Center was withdrawn on January 7. It is as if this project had been born badly or perhaps too quickly, without the consultation of all the players in the market to properly manage its arrival. The government withdrew the application for the deployment of the Health Data Center filed with the Commission nationale de l'informatique et des libertés (Cnil). This is a cruel setback, even if the existence of this medical data repository is not called into question.
A roadmap for 2022
This project is therefore trying to survive as best it can, becoming more and more of a pilot project with the announcement of a roadmap for 2022. "This offer is still recent and is gradually being built. Discover the major projects for 2022"the platform states in its press release. And there are five of them:
- expanding the range of tools for users
- improving the user experience
- simplifying data pre-processing
- facilitating the implementation of the RGPD
- simplification of the platform's operability
The Health Data Hub, which could really contribute to the progress of research in France and at the European level, is therefore still in its infancy. And questions are being asked about how to best manage all this extremely sensitive health data.