PATH
LINKING AND SHARING HEALTH DATA ANONYMOUSLY, SECURELY AND TRANSPARENTLY - LEGAL AND SOCIOLOGICAL FRAMEWORK CONDITIONS
Health data forms the basis for medical progress and the best possible healthcare. However, it is no longer collected exclusively by medical staff, but increasingly also individually via smart watches and apps. It is obvious that this individually collected health data can also be of great benefit to treating physicians for diagnosis or therapy as well as for research. The “PATH - Personal Mastery of Health and Wellness Data” project aims to create a data protection-compliant platform to link personal health data from patient records with individually collected data from smart watches or sensors. The Federal Ministry of Education and Research is supporting this project with 2.27 million euros over three years in the research framework program on IT security “Digital. Secure. Sovereign."
Two sub-projects will focus in particular on the legal (Prof. Anne Lauber-Rönsberg) and sociological dimensions (Prof. Orit Halpern) of the shared use of individually generated health data. From a legal perspective, the question arises as to how individual health and wellness data can be collected and shared in compliance with data protection regulations. The handling of sometimes very sensitive personal data in Germany has led to a very legal protection-oriented approach to the security and protection of patient data and a complex web of legislation that often does not take sufficient account of the growing importance of secondary data use. It is not uncommon for consent procedures to be provided with extensive data protection information and consent forms due to the legal requirements, which are difficult for patients to understand and raise doubts about the necessary informed consent and controllability of their own personal data. A second sub-project will therefore also examine the sociological dimensions and user preferences, including the question of how the empowerment of those affected and the transparent sharing of data can be placed in the context of digital culture and the concept of the quantified self. The impact of the developed infrastructures on users will also be considered.
The PATH project is funded by the research framework program on IT security “Digital. Secure. Sovereign.” of the Federal Ministry of Education and Research. The joint project “PATH - Personal Mastery Health & Wellness Data” will receive 2.27 million euros in federal funding over three years (2023-2025). The total project volume amounts to 3.4 million euros.
Project partners:
Else Kröner Fresenius Center for Digital Health, Dresden University of Technology, Carl Gustav Carus University Hospital Dresden, Leipzig University Hospital, Center for Evidence-based Healthcare (ZEGV), Ada Health GmbH, Una Health GmbH, movisens GmbH.