Health DAta trust REallaboratory to develop and test ecosystem integration of data-driven health research
In the joint project »DaRe«, a data escrow model for medical data is to be developed using radiology as an example. Radiological data are of particular interest for medical research and the development of medical analysis tools, as they form the basis for AI components of imaging devices. The central aspect of the project is to realize a stronger integration of patients as data providers.
Many service sectors are confronted with the need to redefine the nature of value creation along data and to build secure »spaces« for this purpose. The goal of the project DaRe is to conceptualize an intermediary for the area of health-related data, which aims at the integration of patients or citizens as well as commercial end-users into the data-sharing ecosystem. A central challenge is trust between data providers and data users and a directly experienceable added value for individuals. An organizational solution is to be modeled that both enables data evaluation by third parties and protects the right to informational self-determination. Within the project, a realistic test of the organizational modeling will be implemented with relevant stakeholders to evaluate it.
The Fraunhofer-Gesellschaft with its institutes ISST and IMW contributes knowledge in the area of data marketplaces and infrastructures, as well as domain knowledge in the area of healthcare supply and organization built up in various metho-dical projects. In the modeling phase, the Fraunhofer institutes are primarily dedicated to the development of a suitable operating model and the consideration of the target variable »trust« in the data trust to be designed. Furthermore, the Fraunhofer ISST transfers the organizational modeling into a technical implementation concept and a tangible environment for testing within a real laboratory. The FhG accompanies the testing phase from a technical point of view and dedicates itself to the areas of technology and society in the subsequent evaluation and derivation of recommendations for action.
Within the scope of the project, various data trust models will be examined and evaluated in terms of their advantages and disadvantages with regard to the use case by the partners involved, patients as data providers and researchers as well as companies as data users, and the most suitable data trust model will be implemented and practically evaluated within the framework of the real laboratory.
- Fraunhofer Institute for Software and Systems Engineering ISST
- Fraunhofer Center for International Management and Knowledge Economics IMW
- University of Bonn, Chair of Civil Law, Information and Data Law
- Bonn University Hospital, Neuroradiology
- Sponsor: Federal Ministry of Education and Research
- Funding code: 16DTM105A
- Duration: 01/2022-31/2024