Majority of Germans only want access to e-health records with consent
Setback for the plan by Federal Minister of Health Karl Lauterbach (SPD) to convert the electronic patient file (ePA), which has so far been little demanded, to an opt-out principle and at the same time to give doctors and scientists broad access to the digital archive, for example with doctor’s letters, reports and prescribed medication give. “Anyone who does not expressly object is automatically included,” is Lauterbach’s motto. But the majority of Germans want to be asked for their consent before treating physicians or researchers are given access to their sensitive health data.
ePA: Majority wants express consent
This emerges from the results of a representative survey by the Ipsos Institute on behalf of the Greens in the EU Parliament, published on Thursday. 58 percent of Germans are therefore in favor of doctors only being able to inspect their electronic patient registers if they have given their express consent. Only 18.8 percent want researchers to be able to access it automatically. 47.8 percent pushed for general approval, 25.8 percent even for an opt-in for the release of each specific research project. The situation is similar in France and Spain. In Estonia, 25 percent more citizens are in favor of their health data being released automatically for research purposes.
There is no clear line among experts as to whether an opt-out is sufficient to ensure privacy in the healthcare sector. The former Federal Data Protection Commissioner Peter Schaar recently pointed out that the instrument of consent is not the yellow of the egg. Many see it largely devalued by the constant cookie banners on the web. “In view of constant reports of hacks and leaks of confidential patient files, every citizen must be able to decide for themselves whether they want an electronic patient file at all and which treatments should be listed there,” counters MEP Patrick Breyer (Pirate Party). “In order to obtain an independent second opinion and to ensure confidential use of particularly sensitive treatments such as psychotherapy or drug therapy, the decision on medical access to patient files” must also remain in the hands of each individual.
The Green Group, which Breyer has joined, has therefore submitted numerous amendments to the EU Commission’s proposal for a European Health Data Space (EHDS) to the EU Parliament. This is intended to introduce an ePA XXL throughout the EU. “Considering the extreme sensitivity of information about an individual’s physical and mental health, this regulation aims to provide sufficient safeguards to ensure a high level of data protection, security, confidentiality and ethical use of the information,” the Greens demand. For example, member states should continue to require user consent, or at least give citizens the option to opt out of all or selected healthcare professionals registering their EHRs in a centralized system. In principle, the release of health data for research purposes should only be possible with consent.