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European Health Data Space amendments: Let‘s keep patients in full control of their health files!

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The Greens/EFA group in the European Parliament today tabled amendments to the proposed European Health Data Space (EHDS) aiming to keep patients in full control of their health files. Access to personal, non-anonymised health records for research or government purposes should require the explicit consent of a patient, for instance. This patient-centric approach reflects the results of a representative survey by the public opinion research institute Ipsos which the group commissioned.

According to this poll, Europeans want to be asked explicitly for consent before doctors or researchers are given access to their patient files and data. The majority of patients thus prefer an approach different from what the European Commission (no choice) and the Rapporteurs (opt-out only) propose. Specifically, 54% of Europeans want to allow access by doctors to their patient records only with their explicit consent, whereas 37% support the principle of automatic access. When it comes to research, 75% of citizens are willing to grant researchers access to their patient records and data only with their explicit consent, while only 20% support the opposite approach of automatic access (as a rule).

With its amendments to the EU proposal for a “European Health Data Space” (EHDS) submitted today, the Greens/EFA Group wants to draw consequences from this, as its shadow rapporteur in the LIBE Committee Patrick Breyer of the Pirate Party explains:

“Information revealing a person‘s physical and mental health is extremely sensitive. If they can’t rely on this information being treated confidentially by their attending physicians, they may no longer seek treatment. This puts sick people and their family at risk.

In view of frequent reports about hacks and leaks of confidential patient records, every citizen should be able to decide for themselves whether they want a remotely accessible electronic patient file to be kept and which treatments should be listed there. To be able to obtain an independent second medical opinion and to ensure the confidentiality of particularly sensitive therapies such as psychotherapy or drug abuse therapy, the decision on access to patient records by health professionals should also remain in the hands of each patient. We are tabling amendments to the EU Commission’s proposal to ensure that each EU Member State can continue to let their citizens decide about which remotely accessible electronic patient files are kept and who can have access.

Before access to personal, non-anonymised patient files and data is extended to researchers and government authorities as the Commission proposes, we want that the patient‘s consent is sought. This is in line with the overwhelming will of 75% of our citizens. Patients risk foregoing treatment altogether if they can no longer trust in the confidentiality of their therapy. Most Member States already require consent or do not allow access to personal health data for researchers and authorities at all. A mere right to object (opt-out) is too complicated to understand and burdensome to use for most citizens, such as the elderly. However, following the principle of data altruism, patients should certainly be able to voluntarily share their data for research purposes – many are willing to do so.”

Full amendments of Tilly Metz and Patrick Breyer tabled on behalf of the Greens/European Free Alliance Group: https://www.patrick-breyer.de/wp-content/uploads/2023/03/EHDS-amendments-GreensEFA.pdf

Excerpt preview of results of the Ipsos opinion poll funded by the Greens/European Free Alliance Group in the European Parliament (full results will be published soon):  https://www.patrick-breyer.de/wp-content/uploads/2023/03/Ipsos-survey-extract-European-Health-Data-Space.pdf