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EHDS excessive power grab by Brussels

The proposal for a 'European Health Data Space' (EHDS) is an excessive power grab by Brussels, according to privacy watchdog Privacy First. Complete medical records, containing the most sensitive and personal information, could soon be accessed by Brussels and used for a wide range of purposes. This will deprive patients of control over their medical records.

"If they want a Nexit in Brussels, they are on the right track with this," said Marc Smits, board member of Privacy First. "We have a positive basic attitude about European cooperation, but it is becoming increasingly difficult to substantiate it."

End of medical confidentiality

The EHDS model consists of a European super-centre, which can retrieve data from national data centres for use in healthcare, research, innovation, policy-making and legislation. It will give both public and private parties access to medical records of all citizens in the European Union. Last Tuesday, a European Parliament committee agreed to this proposal. Plenary discussion may follow as early as 6 December.

Currently, medical confidentiality guarantees confidentiality within a treatment relationship and thus trust in healthcare. The EHDS puts an end to that. Uncertainty about use of data in the future causes patients to ask themselves today whether they want treatment to be registered. If data on HIV, erectile dysfunction, an abortion, or reports of your pacemaker can be unlocked by the EHDS, there is a risk that patients will avoid crucial care.

Providing anonymised or pseudonymised data to third parties creates an illusion of security. Indeed, medical data is so specific that traceability to a patient is a guarantee rather than an opportunity. That risk only increases when different files of data are linked together.

Freedom of choice abolished

Although a parliamentary majority in a motion demanded that citizens should only be included with their explicit consent, it now appears that citizens will still be compulsorily included in the EHDS. At most, they will be given a choice to restrict data sharing with third parties.

At a recent presentation from the Ministry of VWS also revealed that granting access to data and monitoring it will be assigned to the same organisation and the interpretation of the governance around the EHDS is still anything but clear.


The scale at which data will soon be accessed poses huge risks to citizens' security and privacy. The impact of a hack, data theft, a rebellious artificial intelligence, or combination of these is incalculable. If we have learned anything from the Benefits Affair, it is that negative consequences of wrongdoing are almost impossible to reverse.

The design of the EHDS makes it technically possible to monitor and control citizens' behaviour on a European scale, without them being able to see if and how this is done. Especially in the case of a new pandemic, the temptation will be to start using profiling and predictive algorithms and expand the powers of governments.

It also blurs the distinction between the legislative and controlling powers. The legislature can issue new rules and use digital means to control implementation, as was the case with the Corona Access Card. The government gets more control over the lives of citizens, while the same citizen has no say in the huge institution being rigged with the EHDS.

Back to paper?

Should the EHDS pass, the only protection for patients is the right to destroy their medical records. They will then have to carry their own paper records with them, on which the doctor will then make notes. However, this carries serious medical risks. The alternative is that patients will always have to be wary that an unknown number of organisations may be watching in the consulting room, now or in the future.