Kelber on patient files: "Completely wrong to remove safety measures"
In an interview with Ă„rztenachrichtendienst, BfDI Ulrich Kelber explains why the planned e-patient file is not conducive to building trust.
Prof. Ulrich Kelber
(Image: BfDI)
With the electronic prescription and the "electronic patient file for all", Germany is set to catch up with the digitalization of the healthcare system. However, the electronic patient file (ePA) will initially be launched with some cutbacks. Doctors had many wishes for the ePA, but these will not be able to be fulfilled at the start of 2025 due to time constraints – Industry representatives have therefore recently curbed expectations of the ePA. Data protection and IT security experts also see too little time for a well thought-out implementation. Although some critics consider an electronic patient record to be important, they regularly criticize the planned implementation. "Many people always think that we need to have access to all data so that we can generate knowledge. From a technical point of view, we are actually already much further along," said digital expert Bianca Kastl in an interview with heise online. People could keep their data, but share its analysis anonymously.
Most recently, Deutsche Aidshilfe criticized the fact that it is no longer possible to share all data on a "fine-grained" basis as promised. Kelber also shares this view: "It is unacceptable [...] that the new ePA now reduces citizens' options for fine-grained control of access," recommends Ulrich Kelber, who is still the Federal Data Protection Commissioner, in an interview with Ă„rztenachrichtendienst. "This will turn out to be a mistake in building trust," Kelber is certain. "And it was certainly also a complete mistake to remove security measures. Both for accessing the file and for abandoning individual encryption in the system," warns Kelber.
In his opinion, there will be situations in which data is seen that should not have been or vice versa. Some doctors are also concerned about legal uncertainties, for example because they overlook a document that is important for treatment. Those providing treatment should "be able to record in some form what they were able to see at the time of treatment and what data was available", says Kelber. If there are gross data protection violations at statutory health insurance companies, this must also be sanctioned.
"Data protection kills"
"Several times a day", Kelber had to hear that data protection was hindering digitalization, "sometimes in words that were completely unacceptable. Individual people or organizations were then blamed for the deaths of hundreds of thousands of people," says Kelber. However, there was never any proof of the accusations. Instead, according to Kelber, not even basic IT security is usually guaranteed.
Kelber was also often told that "everyone in Europe is pragmatic when it comes to data protection, only we data protection supervisory authorities in Germany are ideological. At a meeting with colleagues in the European Data Protection Committee, I then found out that the majority of colleagues from other countries hear the same sentence in their own country". However, he also conceded that the many different data protection regulations in the various federal states were "unnecessarily complicated".
Many things would have been possible
According to Kelber, many things in the healthcare sector could have been simpler. However, many of those involved did not agree to reflect the state of the art. "But in this complex system full of individual interests, this was often not wanted," he explained to Ă„rztenachrichtendienst. Kelber had received a lot of criticism due to his veto on the e-prescription redemption route. Pharmacies could have used this route to gain insight into which medicines were being prescribed to people unknown to them, simply by using the insurance number. As Kelber wanted to prevent this, he was insulted. Presumably because he often put his finger in the wound, he was not re-elected Federal Commissioner for Data Protection and Freedom of Information by the German Bundestag.
(mack)