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The "SouveMed" project describes a new way in which patient data can be used safely in sleep research

Data is omnipresent. Health data is of great importance for research and at the same time requires special protection. To this end, the Medical Center - University of Freiburg, together with the Research Center for Informatics at the Karlsruhe Institute of Technology, has developed a procedure in the "SouveMed" project to transparently present the powers and restrictions on data use to all parties involved at all times. The research project was funded by the German Federal Ministry of Education and Research with the aim of enabling the secure transfer of clinical data from private individuals in the specific area of sleep therapy.

"Our aim is to use patient data for research while ensuring that privacy and data protection are maintained," explains Dr. Bernd Feige, physicist at the Department of Psychiatry and Psychotherapy at the Medical Center - University of Freiburg. To this end, the researchers have developed a prototype app in which patients can clearly see what data is available about them. They are also informed about the benefits and risks of the various options for deciding how their data is used and can give their consent. "This procedure helps us a lot in conducting studies on sleep problems and guaranteeing the security of our test subjects' data," says Prof. Dr. Dieter Riemann, Head of the Sleep Laboratory at the Medical Center - University of Freiburg.

Security through a "trustee"

The digital application acts as a so-called "trustee" that receives the data security requirements of all parties involved and ensures that these requirements are met. The parties involved are data generators (e.g. clinics), data consumers (researchers) and data providers (patients).

So far, 11 researchers and 11 patients have tested the digital application and given positive feedback. "Thanks to the manageability of the field of sleep research, our application can map the entire data flow of all participants," emphasizes Feige. After the two-year project period, which comes to an end at the end of this year, the ideas and findings will also be used across departments at the Medical Center - University of Freiburg.