DaRe – Health data trust model for the fair use of data for medical research

Background: Providing fair access to health data

Health data is the basis for accelerating advances in medical research and improving health care in the long term. The foundation of this research is data made available to researchers in both science and industry while preserving the data sovereignty of citizens. Currently, many research projects still fail precisely at this point. In order to simplify medical data use and evaluation and to drive the networking of relevant stakeholders, it is necessary to provide researchers with fair access to health data. An intermediary third-party agency that decides on data access according to predefined or individually negotiated data governance rules could regulate this data access. Data trust models are a promising concept for this.

Project description: Trust model enables data evaluation and protects right to self-determination

The aim of the interdisciplinary project "Health Data trust living lab to develop and test ecosystem integration of data-driven health research" (in short: "DaRe"), funded by the German Federal Ministry of Education and Research (BMBF), is to make radiology medical data available to researchers in a protected environment. Radiology data is of particular interest as it is necessary for developing AI components of imaging devices. In the project, a so-called intermediary in the form of a trust model will be designed to enable data analysis by third parties and to protect the right to informational self-determination. The project aims to integrate patients, citizens and commercial end-users into the data sharing ecosystem. The developed data trust model includes a business model and will be tested in a living lab. The results will then be presented as recommendations for action for service providers, business, politics and the general public.

Range of service: A viable business model

Fraunhofer IMW researchers are responsible for developing a viable business model and accompanying the conceptual modeling of the data trust model. Through their broad knowledge of digital health, they also consider ethical issues in the project, especially regarding the question of which possible incentives promote the release of health data.

Project duration

January 1, 2022 – December 31, 2024

Project partners

  • Fraunhofer Institute for Software and Systems Engineering ISST
  • University of Bonn, Chair of Civil Law, Information and Data Law
  • University Hospital Bonn, Neuroradiology

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