Smart and secure handling of health data

Pedometer on the smartphone, fitness bracelets or smartwatches with pulse measurement function - devices and services for digital self-measurement are now widespread in private use. The extensive data generated not only opens up opportunities for users, but also for the healthcare system, medical research and care. However, users are faced with an unclear information situation: What data is collected for what purpose and to whom is it passed on? Although the General Data Protection Regulation gives users extensive rights with regard to their personal data, the picture is different in practice.

The main obstacle to self-determined handling of data from self-monitoring is not a lack of rights for the individual, but a lack of transparency and the practical problems of actually exercising these rights. The TESTER project (short for "DigiTalE SelbsTvERmessung selbstbestimmt gestalten") is intended to make an important contribution here. The aim is to create the best possible level of transparency and intervenability for self-measurement and to place greater emphasis on the needs of users to protect their data. The research project is funded by the German Federal Ministry of Education and Research (BMBF).

Legal conformity as a benchmark for technology design

The project will develop concepts for privacy assistants. In addition, usability issues of transparency and intervenability are to be brought together with legal aspects. "Health data are particularly protected by law due to their sensitivity," says Prof. Dr. Gerrit Hornung, who is responsible for the legal work at the University of Kassel. "Only by taking legal requirements into account at an early stage can we succeed in designing technical solutions that are at the same time in line with interests and in conformity with the law." To this end, not only legal, but also social questions regarding the transparency and intervenability of self-metering are considered. In order to exclude the problem of discrimination with regard to medical care, aspects of equality law are also incorporated into the development of the privacy assistant. Finally, legal requirements will be analyzed, the implementation of which will enable users to individualize the self-measurement systems according to their health-related preferences.

TESTER is being led by the Fraunhofer Institute for Industrial Engineering IAO. In addition to the University of Kassel, the University of Stuttgart and Actimi GmbH are also involved.

Contact:

Gerrit Hornung
University of Kassel
Department of Public Law, IT Law and Environmental Law
Tel.: 0561 804 7923
E-mail: gerrit.hornung[at]uni-kassel[dot]de