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Pooling our health data on a European scale? Five questions around this

To be able, on vacation in Spain, to go to the doctor and that he can automatically consult a European version of our medical file to treat us as well as possible? This is one of the possibilities that the European Commission intends to offer through the project of“European Health Data Area” which she has just revealed. But what are the issues and the points of vigilance?

1. What is health data?

Health Data is information collected about us and our medical history. Prescriptions, laboratory results, hospitalization or medical imaging reports… Only healthcare professionals directly involved in our care can access our complete medical file.

2. Who are they interested in?

The world of public and private health (university researchers, health establishments, start-ups like Doctolib, pharmaceutical groups, etc.) for research, innovation and the improvement of health systems. Crossing our health data with that of other patients, or with data of another nature can help to understand the causes and risks of diseases in order to better prevent them, improve diagnoses, develop new treatments or ensure patient safety by detecting health risks earlier. For example, a case study is currently being conducted to find out whether diabetes drugs can cause bladder cancer.

“It’s very interesting and we have to do it, otherwise we will be overtaken by other countries, recognizes the Modem MP for Vendée Philipe Latombe, who is working on the issues of digital sovereignty. In health, we are only at the beginning. This requires a very large amount of data, but to be able to collect it requires transparency and trust”this information being by nature confidential and sensitive.

Read also : Leak of medical data in France: the Cnil launches investigations

3. Where is France?

This is the challenge of a public interest group born at the end of 2019, called Health Data Hub (HDN). It brings together 56 stakeholders, the vast majority from public authorities. Objective, to centralize access to data, among others, from health insurance, hospitals, medical causes of death (Inserm) via a national platform, to make them more easily available to research projects, within a framework secure and compliant with the General Data Protection Regulation (GDPR).

55 projects are currently supported by the HDH. But they are struggling to move forward due to a controversy: it is the cloud service (remote data storage) of the American giant Microsoft that has been awarded the hosting of this platform, because of its strong technological capabilities. . The Health Data Hub will therefore probably have to find another host at the end of 2022 if it wants to reassure.

Why not “choose purely French actors” like the AP-HP (the CHU for the whole of the Ile de France) for example, ” which already processes the data of 11 million patients, and help them improve their skills? »argues InterHop, a group of engineers, lawyers and health professionals mainly from French hospitals.

4. What does Europe want to do?

After having succeeded in setting up the European health pass to facilitate the movement of citizens despite the Covid, Europe intends to go further. She wants to create “a European health data space” (The European Health Data Space). The project for 2025, unveiled by the Commission on May 3, 2022, will still have to be approved by the European Council and Parliament.

Objective, to allow European citizens traveling within the EU to permanently access their health data electronically and to share them with health professionals. Researchers could also use it via a dedicated organization which would guarantee confidentiality, just like private research but under certain conditions.

5. What precautions should be taken?

In France, work on data from the Health Data Hub “is carried out in a very secure context, which guarantees anonymization to citizens, a very high level of protection against the risks of cyber attack and total transparency of the results obtained”, assures its director Stéphanie Combes. The president of InterHop, Adrien Parrot, a doctor and computer scientist who worked at the site where all of the AP-HP’s health data was collected, believes that “Anonymity is very complicated. It’s more of a pseudonym: we remove ten or fifteen really identifying variables, but that’s still personal data. »

Read also : Hacking of medical data: “It is very likely that crooks will use them”

Still, all these projects are going in the right direction for citizens and patients, believes Philippe Latombe. But “I want to be sure that our data is well secured and not in a cloud where it can be stolen or sold. We must choose one with security, totally immune to extraterritoriality and which is in a governance that associates patients, States and the various actors. »

On a European scale, Adrien Parrot recommends, like the European Commission, the “ interoperability » information systems, in other words to make the digital health systems of the Member States able to speak to each other in the same European format.

By facilitating the exchange of data on the one hand and the development of public policies and innovation on the other, Brussels expects 11 billion euros in savings over ten years. But the cost of the project would be estimated by Europe at between 700 million and 2.5 billion euros, according to the Bloomberg agency. And 12 billion euros should be invested by the States to better digitize and upgrade their systems.

“It requires a lot of work and exchanges between the health professionals who fill in the data and the engineers who process it”, recognizes Adrien Parrot. While wondering how this system will be articulated, for example in France, with “My health space”, the new shared medical file launched by the government in early 2022.

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