Health and digital rights organisations urge EU lawmakers to uphold patients’ rights in new health data law

European lawmakers must ensure patients have control over their private medical records by adding an ‘opt-in’ consent requirement for the secondary use of health data under the proposed European Health Data Space (EHDS).

By EDRi · April 13, 2023

More than a dozen organisations representing patients, medical professionals, persons with disabilities, consumer and digital rights organisations, as well as workers and trade unions have written to members of the EU Parliament, urging them to ensure that patients’ rights and control over their private health information are upheld in the proposed European Health Data Space (EHDS).

Read the open letter

Through the EHDS, lawmakers want to create interoperable and modern digital health systems across the EU. Unfortunately, the European Commission’s proposal fails to protect patients when it comes to the sharing and use of their personal medical information by third parties. Patients would have no say over the sharing and commercial exploitation of their data and would not even be informed about who receives it.

The EU Parliament must introduce an ‘opt-in’ consent regime so that data users would be required to obtain valid consent from patients whose personal medical records they would like to use for secondary purposes.

Jan Penfrat

Senior Policy Advisor

Mastodon: @ilumium