The lead committees of the European Parliament, LIBE and ENVI, have today voted in favour of the creation of a “European Health Data Space” (EHDS), which will bring together information on all medical treatments received by citizens. Specifically, the bill will oblige doctors to upload a summary of each patient’s treatment to the new data space (Article 7). Exceptions or a right to object are not provided for, even when it comes to particularly sensitive diseases and therapies such as mental disorders, sexual diseases and disorders such as impotence or infertility, HIV or drug abuse therapies. Patients would be able to restrict access to their health records, but not their creation.
“The EU’s plan to collect and interconnect records on all medical therapies entails irresponsible risks of data theft, hacking or loss. Even the most delicate therapies can no longer be administered off record in the future,” criticises Patrick Breyer, Pirate Party MEP and co-lead negotiator for the Greens/European Free Alliance in the EU Parliament’s Committee on Home Affairs. “This is nothing other than the end of medical confidentiality. Have we learnt nothing from the international hacker attacks on hospitals and other health data? If every mental illness, addiction therapy, every erectile dysfunction and all abortions are registered, concerned patients risk being deterred from seeking urgent medical treatment – this can make them ill and put a strain on their families. This digital disempowerment of patients needs to be put to a vote in plenary in December!”
Breyer, who voted against the bill today, also criticises the fact that patients would need to actively object to prevent healthcare providers and industry from using their data. “For many patients who have little time, limited language skills or education, or who are elderly, having to actively object with a certain authority or via a digital tool is too complicated in practice to give them a real choice. International standards such as the World Medical Association’s International Code of Medical Ethics or the Helsinki declaration on Ethical Principles for Medical Research require seeking patients consent before disclosing their medical information. A public opinion poll we commissioned confirms that citizens expect to be asked for their consent before their health records are being shared. Every website asks for our permission before setting a cookie, but we are not even asked before our health records are shared? This system deprives patients of real control over their data and does not deserve our trust.“
The European Parliament’s plenary is due to vote in December and can make final amendments. A survey by the European Consumer Organisation (BEUC) has shown that 44% of citizens are worried about their health data being stolen; 40% fear unauthorised access to their data.
According to the latest state of negotiations, the EU governments also want to introduce a compulsory interconnected electronic health record for everyone without any right of objection. This could be decided as early as 6 December in the so-called COREPER Committee. Trilogue negotiations between the institutions will ensue with a view of finding an agreement early next year.