European Health Data Space (EHDS): Patients risk losing control over their data in decisive round of negotiations

Tonight from 6 pm, the presumed final round of negotiations (trialogue) on the creation of a European Health Data Space (EHDS) will take place behind closed doors. One of the negotiators, MEP and civil rights activist Patrick Breyer from the Pirate Party, explains what is at stake in the negotiations:

“Depending on the outcome of the negotiations, you could see your sexually transmitted diseases and sexual disorders, impotence and infertility, abortions, addictions and mental illnesses sold off to tech companies and the pharmaceutical industry for ‘product development’ or for training AI products, to health ministries and health insurance companies, to teaching staff for showing patient records in lectures – without any patient control, without a guaranteed right to opt outor requirement for consent, even for the most intimate conditions. The patient data could be accessible under a pseudonym and remain identifiable. Ultimately, this could mean the end of medical confidentiality and deterring patients from seeking urgently needed treatments for fear of stigmatisation, possibly even resulting in suicides. Profit interests could be blatantly prioritised over the interests of patients.

The EU Parliament is calling for a Europe-wide, guaranteed and full right for patients to opt out of their health data being passed on to third parties, but is encountering fierce resistance from EU governments and the EU Commission. Even the existing national rights to opt out of the transfer of data for research purposes, is at stake in the negotiations and could be restricted. In any case, they could come under pressure eventually if no right to object applies in other EU states and their ‘pharmaceutical industry’ therefore complains of being disadvantaged.

Depending on the outcome of the negotiations, it will be impossible for patients to use the national electronic health system without their data being accessible across borders throughout the EU. Independent certification of the security of European health data systems may notbe required . And the storage of our patient records threatens to be permitted even outside Europe, for example in the USA.

Overall, EU governments and the EU Commission want to accumulate, interconnect and pass on the most sensitive patient records without wanting to guarantee patients’ control over their data. , ‘Anything goes, no obligations’ is not an approach that patients can trust. Without trust, a European Health Data Space cannot exist. According to surveys, more than 80% of EU citizens want to decide for themselves about the transfer of their patient records to third parties. I will do my utmost in the final negotiations to fight for citizens’ right to privacy and medical confidentiality.”