E-patient file: Deutsche Aidshilfe warns of possible discrimination

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Six months before the planned launch of the electronic patient file for all (elektronische Patientenakte, ePA), Deutsche Aidshilfe (DAH) warns of possible discrimination. It is therefore calling for "urgently needed" technical improvements to the ePA, which comes as only just over one million insured persons have created an ePA on their initiative. The main criticism is that the "fine-grained authorization management" previously promised by those responsible, in which users can decide in detail which doctor is allowed to see which information and which is not, is no longer possible as planned.

Politicians fail to keep their promises

This means that those with statutory health insurance can only hide files from everyone or from no one. "It is therefore not easily possible to release a document in the ePA only for doctor A, but not for dentist B," writes Deutsche Aidshilfe. Although it has been promised that the dentist will not be able to view any information from the psychotherapist, according to Deutsche Aidshilfe there are still uncertainties regarding implementation. Although it is possible to keep certain information out of the ePA or only make it available to certain institutions, the DAH believes that this is complicated.

"The documents are automatically sorted into different folders. There is the option of folder-based visibility control. However, the categories are so general that they are only of limited help in controlling visibility," it continues. "The function therefore has no really useful application in its current form. A more precise folder-based control of visibility from the previous version of the ePA has been abandoned," is the sober verdict.

For example, medical information can be derived from the medication list created in the ePA. There are also further concerns regarding the Health Research Data Center, which already holds the health insurance companies' billing data and for which there is still no security concept. However, this is particularly important regarding planned EU-wide research projects.

No self-determination

"The opt-out principle for primary care and research data transfer shows that self-determined and actively acting patients were not at the center of the considerations during development", the DAH positions itself. An ePA that can be used in key areas without the active involvement of patients contradicts the self-determination approach in healthcare. Numerous data protectionists have been criticizing the project for some time.

The specification for the transfer of data has not yet been published. Overall, the analysis of the planned ePA for all clearly shows that there are still "serious shortcomings" in terms of patient rights and data protection. There is an "urgent need for technical improvements". Initially, the ePA will come with a very limited range of functions, contrary to the wishes of the statutory health insurance physicians. The industry, on the other hand, criticized these wishes and called for more realism due to the short implementation deadlines. The specifications for the ePA were released for comment at the end of 2023 and published on January 15 of this year.

Patient well-being should have priority

"The well-being of patients must be at the forefront of the design of the electronic health record. The right to keep sensitive information to oneself must not be watered down by the ePA," says DAH Board Member Stefan Miller. "Anyone who takes this right seriously must also provide software that is easy to understand and use."

In order to protect insured persons from possible discrimination and to provide information about the patient file, the DAH is making a handout freely available. In the opinion of the DAH, there has been a failure to provide sufficient information about the EPR. Among other things, the DAH explains the benefits and risks of the electronic patient record, its IT security and access to research data, as well as the rights of data subjects and options to object. Examples listed there include "HIV, addictions and mental illnesses".

(mack)