Tribune. The health crisis has highlighted the role that data play in steering collective measures, enabling the improvement of care, and advancing scientific knowledge. France has all the elements to make the best use of those available, thanks to the excellence of its administrative databases and the wealth of its registers and research cohorts. It also has a strategy to operate its National Health Data System, one of the elements of which is the Health Data Hub, a public interest group created in 2019.
The mission of this platform is to facilitate access to health data under high security conditions and with respect for patients’ rights. In two years, the progress has been remarkable. Thanks to the establishment of this infrastructure, both technical and regulatory, around twenty large data collections have been identified as being of general interest, in addition to administrative bases such as that of the Health Insurance, health establishments and medical causes of death.
A one-stop-shop for analysis has been set up, as well as support for the efficient use of these resources. Forty-eight innovative projects were selected through calls for projects, and others were carried out to support the management of the health crisis. The Health Data Hub is already firmly focused on Europe and actively participates in the work for the establishment, by the European Commission, of a common space for health data.
Technically, these advances are made possible by the simultaneous use of data dispersed in remote databases. This reduces data access times and makes it possible to answer research questions on actual practices and their consequences. It also promotes the realization of projects in the service of care, practically impossible to implement otherwise. This is the right approach to accelerate the understanding of inequalities in access to treatment, of the different responses of patients to treatment, or to monitor in the long term, for example, the benefit / risk ratio of health products.
Multiplicity of stakeholders
Currently, the Health Data Hub is supporting a project that aims to prevent outbreaks of heart failure by analyzing data produced by connected pacemakers, another on a rare cancer, sarcoma, for which traditional clinical trials are impossible, or even work on the development of tools for predicting the evolution of prostate cancer.
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