EU Health Data Space on the finishing line: Will our health data be shared across Europe without giving us a say?

The final negotiations (trilogue) on the European Health Data Space are taking place in Brussels this evening. One of the negotiators, Pirate Party MEP and privacy expert Patrick Breyer, points to a potentially momentous last-minute change:

“The right of patients to object to cross-border access to their patient file (Article 8F(2)) is in danger of being removed. Any nationally created electronic health record could thus automatically be made available to foreign practitioners, authorities and researchers, among others. This is contrary to the interests and wishes of patients, only a minority of whom, according to a public opinion poll commissioned by consumer organisation BEUC, agree to cross-border access to their patient records. It also does not even come close to doing justice to the sensitivity of the data, which includes records on addictions, mental disorders, abortions, sexually transmitted diseases and reproductive disorders.”

Breyer also points out other sticking points 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 transferred to health ministries, universities and health insurance companies – without any patient control, without a guaranteed right to opt-out or any 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.
Independent certification of the security of European health data systems may not be 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.”