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European Health Data Space: My health is my business, respect that!

European Parliament Freedom, democracy and transparency Press releases

In the run-up to tomorrow’s vote in the European Parliament on the creation of a European Health Data Space and on amendments to prevent a mandatory European patient file, Pirate Party MEP Patrick Breyer the following speech in today’s plenary debate:

“Madam President, Commissioner, honourable colleagues.

We are representatives of the people. Surveys tell us: Citizens do not want all treatment, all of our physical and mental disorders to be collected in a Europe-wide networked electronic patient file without being asked, exposing them to security risks, as you are planning. Mandatory electronic patient records are unacceptable!

The majority of citizens also do not want our doctors to be able to view our entire medical history, from mental disorders to abortions and potency problems, without being asked. Interconnected electronic health records can have advantages, but as a Pirate, my conviction is: Nobody other than myself has the right to decide what is good for me and my health.

More than 2/3 of Europeans are opposed to industry being able to access our non-anonymised health data, such as psychotherapy records, without our consent e.g. for product development, as you propose. Why don’t you ask patients what they want?

In the interest of industry profits, you intend to undermine medical confidentiality, which is essential for not being deterred from agreeing to marital therapy or drug abuse therapy, for example, which may constitute a risk to our reputation. Do you realise what you are doing to families?

Stop trying to tell us that good care or research would only be possible by disempowering patients in this way. Our amendments show how progress and respect for the patients’ will can go hand in hand.

I insist: My physical and mental health is my business. My health data belongs to me. Respect that!”

Background: For tomorrow’s vote, MEPs are proposing amendments to prevent a mandatory Europe-wide interconnected health data space and to keep patients in control of their health data. The proposed EU Health Data Space regulation would oblige doctors to enter a summary of each patient’s treatment in the Europe-wide interconnected, remotely accessible system. The text does not provide for exceptions or a right to object even for particularly sensitive diseases and therapies such as mental disorders, sexual diseases and disorders such as erectile dysfunction or infertility, HIV or addiction therapies. Patients would only be able to object to access to their electronic patient file. How this right to object could be exercised is not specified. A survey by the European Consumer Organisation (BEUC) has shown that 44% of citizens are concerned about theft of their health data; 40% fear unauthorised access to data.

The plenary of the European Parliament is due to vote tomorrow and can approve final changes. The first round of trilogue negotiations between the EU Council, EU Parliament and EU Commission is due to take place on Thursday.