Health & digital rights organisations and trade unions to the Council of the EU: Uphold patients’ fundamental rights in the EHDS!

The Council of the EU must uphold European patients’ fundamental rights and agree on a right to ‘opt-out’ of the use of patient medical records in the final negotiations on the European Health Data Space (EHDS).

By EDRi · February 8, 2024

13 organisations and trade unions representing patients, medical professionals, persons with disabilities, consumer and digital rights, are urging the Council of the EU to uphold European patients’ fundamental rights and agree on the right for opting out of the primary and, in particular, secondary use of medical records in the European Health Data Space (EHDS) for all people in the EU.

In May 2022, the European Commission proposed the European Health Data Space (EHDS) in an attempt to improve the ways in which people’s sensitive medical data is made available for various kinds of uses. The EHDS claims to give individuals more control over their private information, but in the original proposal by the Commission, patients would have no say over the sharing and commercial exploitation of their data and would not even be informed about who receives it or what is done with it.

As they go through the final negotiations, the Council must agree on patients being able to ‘opt-out’ of their personal medical records being used – including by tech corporations – for purposes like research or training AI systems.