Medical data: UFC Que-choisir wants to better regulate the exchange of information between countries

The UFC-Que Choisir Consumer Association asks the European Union (EU) not to go too far in sharing health data between states. Colleagues from different EU countries join her in this desire in order to preserve the confidentiality of patients.

The European legislative proposal provides for the creation of a “European health data space”. In particular, it would allow every European to share their health data with their caregivers, wherever they are in Europe. “While the usefulness of such a device is quite understandable (for example, accessing the file of an unconscious patient admitted to the emergency room while abroad), nevertheless, it should not hide the risks of sharing confidential data,” said Que Choisir and seven others. consumer associations within the Beuc (European Bureau of Consumer Associations).

This “sensitive data” could be from a sexual health registry, for example, or related to menstrual cycle monitoring. 90% of people* would be against such an exchange of information. In general, two-thirds of the Europeans surveyed do not want their medical data to be transferred from one country to another.

Moving from Implied Consent to Explicit Consent

Given these risks, Europeans need to give “explicit consent” to sharing their data with caregivers from other European countries, the associations say. In the current “too permissive” legislative proposal, consent is implicit: the consumer can object to the cross-border sharing of their data, but they must tick the correct box.

In addition, the proposed legislation should be even stricter when it comes to sharing your data with third parties who are not your guardians, and in particular with private companies, the associations say. In this case, it will be necessary to require from the consumer “explicit and informed consent”, if they wish. They also ask that genetic data not be part of the data that can be shared because it is structurally impossible to anonymize it.

Legislation should also exclude any genetic information or data generated by digital health and wellness applications from shared data, they add.

8.4 million French people have an online medical safe

France has already created “My Health Space” at the national level, a kind of open digital safe for every patient. It automatically stores medical records relating to him today, mainly the results of medical tests. In the long run, he will also be able to post, for example, hospitalization reports or prescriptions from a general practitioner.

The patient explicitly decides whether to open his safe to his guardians, and only to them, and he can decide to deny access to this or that document. All French social pension holders have a safe of this type, with the exception of those (about 5%) who are formally against it. But so far, only 8.4 million of them have made the online process to access it and be able to use it.

96% of French people use online medical platforms, says Coué Choisir. This could be a health insurance site (Ameli), a mutual insurance site, or even doctor appointment sites like Doctolib. But almost half of respondents (47%) fear their medical data will be stolen.

* Poll conducted by Beuc in eight European countries in February 2023 among 8,067 people, including 1,002 in France.