20261020 Gesundheitsdaten gehen an Forschungsdatenzentrum

The Health Data Vacuum Cleaner

Perhaps some of you have wondered why, after hundreds of reports on the electronic health card (eGK) and the electronic patient record (ePA), there has been no further coverage of this topic on our site for the past 18 months. First, everyone on our team who deals with this topic has exercised their right to opt out and is therefore no longer involved in it. And second, nothing new has happened in the past 18 months, except that the e-prescription has its problems.

Nothing new — which means that, according to a study by Ernst Abbe University of Applied Sciences in Jena, only 3.4 percent have used the ePA multiple times, even though 87 percent of those with public health insurance are generally aware of it. Twenty-four percent would be interested in using it, but they abandoned the registration process due to its frustrating nature.

The Health Research Data Center

There’s some new information: Starting in October, ePA data can be transferred to the Health Research Data Center (FDZ). Therefore, it is now high time to object to this transfer — or even to the entire ePA — if you do not want this data to be shared, according to the Widerspruch-ePA newsletter.

Before your data is “transferred,” health insurance companies must inform their policyholders of the transfer six weeks in advance. It appears that Gematik, as the IT service provider, is once again having problems with its schedule...
By early 2027, health data — such as all of our medication lists — is expected to be available at the FDZ. In this regard, the Federal Data Protection Commissioner and the Data Protection Commissioner of North Rhine-Westphalia have criticized the fact that the data to be made available for research is to be merely pseudonymized. (https://www.bfdi.bund.de/SharedDocs/Pressemitteilungen/DE/ 2026/13_Data_Barometer_Recommendations_for_Action_ePA.html , https://www.ldi.nrw.de/Forschung_Patientendaten)

Further potential problems for insured individuals — even though the ePA’s data protection issues at Gematik appear to have been resolved for now — may arise from government or employer access to the ePA (see newsletter). The planned “real-world labs” in the proposed “Law on Data and Innovation in Healthcare” also pose risks due to uncontrolled AI applications or hacker attacks.