On-demand access to French national health system data indicators for patient associations with the Health Data Hub

Access to healthcare data has been a major concern for patients and healthcare users’ associations for many years in France. As far back as 2008, when France Assos Santé set up a national task force dedicated to digital healthcare, the exploitation of the French National Healthcare Data System was already on our agenda. This fall, we have reached a new milestone with the launch of a new service in collaboration with the Health Data Hub, a significant step in our commitment to enable access to healthcare data and its uses.

The Health Data Hub is the public French institution whose mission is to facilitate access to the French National Healthcare Data System which gathers data from national security spendings (reimbursements for patients or payments for healthcare providers), hospital activities and causes of death. These data can be accessed by public or private researchers, industrial players, the media or associations, provided that it is used for public interest purposes and complies with a strong regulatory and ethical framework.

In 2023, the average time taken to access data from the start of the application process was 9 months. Reducing this time and simplifying or facilitating procedures is one of the main priorities of the Health Data Hub and the new government strategy for collective health data and its secondary uses. One patient association successfully accessed and used this data in 2022, with the help of the Health Data Hub, leading to the publication of a useful starter kit to help such associations meet the specific challenges they may face.

Following this experience, France Assos Santé and the Health Data Hub developed the idea of organising simplified access to this public data, tailored to the needs of patient associations. In most cases, these associations do not have adequate resources (financial, skills, etc.) to carry out such major projects and may be faced with problems in exploiting the data for advocacy or scientific purposes. Nevertheless, patients and healthcare users’ organisations participation in research is growing strongly. Facilitating the use of data is therefore not only a question of ethics, but also health democracy.

This new ‘on-demand access to national health system data indicators for patient associations’ service aims to facilitate access to data in the most usable format possible for these associations, thanks to aggregated, anonymous and personalised indicators. Although these indicators are only descriptive and do not allow statistical inferences or modelling, they can play a key role for associations in better understanding the population they represent and, ultimately, in fueling their associative actions and advocacy.

To mark this launch, we have published an educational booklet on the ins and outs of this new service, its potential but also its limitations, and how to use it. To this end, we have set up a one-stop shop to deal with these requests (or queries), bringing together France Assos Santé and the citizen department of the Health Data Hub. Its role will be to help associations formulate their requests in collaboration with the Health Data Hub's data expertise team.

Our aim is to continue to support and encourage the active participation of patients in the research and exploitation of health data. With this new service, we are paving the way for a more democratic and transparent use of health data, in a field that could not be more crucial. With the European Health Data Space coming, patient organisations have a key role in promoting the use of health data for collective purposes and public interest, for a trustworthy model enabling patients participation at individual and collective levels.

Written by Arthur Dauphin, Digital Health Officer at France Assos Santé