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European Health Data Space:  Threat to self-determination and privacy

European Parliament Freedom, democracy and transparency Press releases

This afternoon, the EU Commission will present draft legislation to the Committee on Civil Liberties, Justice and Home Affairs (LIBE) to create a “European Health Data Space” (EHDS). The proposal aims to connect patients‘ health data across Europe. For example, patients’ medical histories, test results or prescriptions are to be shared with hospitals and doctors treating a patient throughout the EU, unless the patient restricts access. Industry, research and authorities would also be given access to personal health data.

Member of the European Parliament Patrick Breyer (Pirate Party) is shadow rapporteur in the LIBE committee and comments on the proposal:

“Information revealing my physical and mental health is extremely sensitive. If I can’t rely on this information being treated confidentially by my attending physicians, then I may no longer feel confident to seek treatment at all. This puts sick people and their families at risk. That’s why the proposed EU-wide exchange of health data needs to meet the following requirements:

  1. Only the attending physician should have access to their own health records in the absence of the patient’s free consent. This includes the fact that a person is being treated by a particular doctor in the first place. There are good reasons, for example, to obtain a second opinion without the doctors involved knowing about each other.
  2. Without the free consent of the patient, treatment information may only be stored locally by the patient‘s trusted doctor and not automatically in centralised databases, where patients lose control over it. There is a risk that in the event of a loss of centrally stored data, the data of the entire population will suddenly be lost.
  3. If there is ever to be access by industry, by research or even by politics, then only to anonymised and aggregated data. It is not enough to simply remove the names of the patients. After all, treatment histories are so unique making it is easy to reassign them to the person in question.

The EU Commission’s legislative proposal fullfills none of these requirements. Obviously, the proposal was not designed in the interest of the patients, but of industry. There is a lot of work ahead to ensure that patients can continue to trust in the confidentiality and security of their highly sensitive health information and that their right to self-determination over their data is respected!”