This morning, WeMove Europe, the European Disability Forum, the European Trade Union Confederation and European Digital Rights (EDRi) handed over the signatures of more than 100,000 EU citizens to MEPs Patrick Breyer (Pirate Party, Greens/EFA) and Petar Vitanov (S&D), who are currently co-negotiating legislation to create a European Health Data Space (EHDS).
In their open letter, the signatories demand respect for the confidentiality of their medical records, and in particular call for a requirement to obtain the explicit consent of patients before their health data is shared to be used for other purposes. So far, the negotiators in the European Parliament are only proposing a right to object (opt-out).
MEP Patrick Breyer (Pirate Party), who is co-negotiating the proposal on behalf of the Greens/EFA group, comments on the handover of signatures:
“This petition comes at the right time and constitutes important support in the fight to keep patients in control of their medical records. There must be an end to playing off medical confidentiality against medical progress, as the political majority and a myriad of lobbyists here in Brussels are doing. Anonymised and aggregated datasets, representative datasets collected with patient consent and data altruism based on broad consent could advance research without sidelining patients. After all, our medical records include the most intimate information about mental problems, drug abuse, abortions or potency problems.
In the face of constant reports about hacks and leaks of confidential patient records, every citizen should be able to decide for himself or herself whether he or she wants an electronic patient record at all and which treatments should be listed there. In order to obtain an independent second opinion and to ensure the confidentiality of particularly sensitive treatments such as psychotherapy or drug treatment, the decision on medical access to patient records by third parties should also remain in the hands of the individual.”