Health Data Trust Real-World Lab for the development and testing of ecosystem integration in data-driven health research
Overview
“DaRe” - the Health Data Trust Real-World Lab for the Development and Testing of Ecosystem Integration in Data-Driven Health Research - is a project funded by the BMBF and carried out jointly by ZMDT (represented by the Specht-Riemenschneider Chair prior to February 1), Fraunhofer ISST, Fraunhofer IMW, and the Department of Diagnostic and Interventional Neuroradiology and Pediatric Neuroradiology.
Project Duration: January 2022 - December 2024
Objective
The objective of the project was to enable and facilitate the secure, trustworthy, and legally compliant use of health data for research in the public interest, without compromising data protection and data security. The project supported the development of a real-world laboratory for a data trustee for the purposes of data-driven health research. The goal was to establish a viable - and, in particular, self-financing - business model that is embedded in the overall data ecosystem while also integrating the relevant stakeholders, especially patients as the original data providers. This was intended to ensure their autonomy in the digital health space.
Legal Framework and Balancing of Interests
The processing of health data in DaRe is based on a careful balancing of research needs and data protection interests. Instead of cumbersome consent procedures, we rely on a fiduciary approach that prioritizes scientific benefit without infringing on the right to informational self-determination.
Four principles of data security
Project results
The project made it possible to create a secure processing environment for data holders such as hospitals or research institutions. In this environment, data can be temporarily made available to third parties for analysis without the data itself being transmitted. Instead, the data recipients provide their own algorithms and receive only aggregated results in return. User fees cover the costs.
The project is funded by the Federal Ministry of Research, Technology and Space.