Data protection report on pain practice register reveals questionable practices

Health data is considered very valuable. Increasingly, doctors are being offered money or other benefits in exchange for health data. Once again, the Netzwerk Datenschutzexpertise has sharply criticized this practice in a report – this time on the pain practice register. The register is operated by the German Society for Pain Medicine (DGS) and the company O.Meany. It has been collecting extensive health data from pain patients since 2014 with the help of questionnaires and doctor information. According to the network, data protection rights are being disregarded, and considerable profits are being made from sensitive patient data.

“Legally ineffective declarations of consent”

The data is marketed under the pretext of non-profit status and with scientifically questionable evaluations, especially for the pharmaceutical industry. “With non-transparent information and legally ineffective declarations of consent, the operators obtain sensitive health data from patients and healthcare professionals with the aim of providing good treatment, which is then turned into money for the pharmaceutical industry under the guise of non-profit status with scientifically questionable evaluations. Disclosure of the practices is refused”, the report (PDF) states.

The information provided to patients and doctors about the actual use of the data is not transparent. Those responsible refuse to disclose the exact practices. The German Society for Pain Medicine has not yet responded to questions from heise online, such as to whom and under what circumstances the data is sold.

The documentation is carried out via the online platform iDocLive, which is used as a supplement to practice management systems. The data stored in the register is not only used for treatment and billing, but is also used for research purposes. Behind the complex network of data-processing bodies is private lecturer Michael A. Überall, who is involved in several central functions. This was first revealed by Der Spiegel.

“Questionable conflict of interest”

The research revealed that Überall and his company O.Meany operate software called iDocLive, which is used to manage patient data. Patients have to complete the pain questionnaires and pain diary for the pain practice register. Former DSG board member Astrid Gendolla found the conflict of interest questionable. Critical questions were dismissed. “The whole system primarily serves the interests of those who own the data and earn money with it. That's neither the patients nor the doctors,” Gendolla told Der Spiegel.

According to Spiegel, the data is used by pharmaceutical companies, among others, to prove the effectiveness of certain drugs against pain. In the example of the painkiller Tapentadol from the pharmaceutical company Grünenthal, the results were positive. Überall also received numerous grants and contracts from Grünenthal and similar companies. The scientific validity of the results is questioned.

(mack)