The latest European Parliament (EP) efforts, grappling with how to allow access to sensitive medical records without patients’ permission, while still maintaining a semblance of caring for privacy, has had an update.
Last week, a plenary vote in this EU institution revealed that while most EP members (MEPs) want to allow that access – and in that manner – they are also opposed to wholesale, mandatory creation of electronic records for every person in the EU.
The scheme is known as the European Health Data Space, and it received the support from an EP majority.
As privacy and digital security advocate, lawyer and MEP Patrick Breyer notes on his blog, this database would be accessible remotely, and consist of health records of each medical treatment.
It was only thanks to an amendment accepted at the last minute (proposed by Breyer, of Germany’s Pirate party, and several other EP groups that do not form the EP majority) that nation-states will be able to let their citizens object to having their sensitive health data harvested into this interconnected system of medical records.
Breyer also notes that in his country, Germany, as well as in Austria, the (always unfortunate, as in being the opposite and negative version of “opt- in”) “opt-out” in this matter is already in place.
Now, the (in)famous complexities of EU decision-making are coming to the fore, and the text of the legislation that the EP passed will be the subject of negotiations between the bloc’s 25 national governments where the “opt-out” is at this time out of the question.
All this is a problem because, as Breyer put it, “For many patients who have little time or limited language skills, or who are older, it is too complicated to have to object in writing to a specific authority or to use digital tools to object.”
His second amendment – that would have mandated patient consent before their medical data is shared with researchers and doctors, has been rejected.
“A compulsory electronic patient file with Europe-wide access entails irresponsible risks of theft, hacking or loss of the most personal treatment data and threatens to deprive patients of any control over the collection of their illnesses and disorders,” this MEP commented, slamming the idea as the end of medical confidentiality by any other name.
Breyer is concerned that people suffering from some highly sensitive illnesses and disorders, or in need of procedures of the same nature, might find themselves deterred from seeking help – with their problems and those faced by their families only deteriorating from there on.
“In the trilogue negotiations, I will fight to ensure that national opt-out schemes are clearly allowed for in the legislation,” the MEP writes.
