Project description

Digital patient twins combine various types of health data to create dynamic digital models of an individual. This data may include, for example, medical histories, laboratory results, imaging data, information from wearables, and details on the person’s lifestyle or environment. In the future, such models could help simulate disease progression, identify health risks early on, and tailor prevention and treatments more effectively to individual patients. At the same time, digital twins raise fundamental ethical and societal questions: What data should be included in the model? Who decides this? Who may access or reuse the information? How can privacy, autonomy, and fair access be ensured? And who is responsible if a digital twin generates inaccurate predictions or influences medical decisions?

The project “My twin, my rules – A data café on the future of health data” brings these questions from research and development into the public sphere. At mobile data cafés located in central areas of Karlsruhe and Kaiserslautern, citizens can participate on the spot and design their own simplified digital twin. Using cards, profiles, and decision-making scenarios, they choose which health data may be included, which information should remain private, and which persons or institutions they would grant access to. The aim is not to create a technically functioning model, but rather an opportunity for reflection and discussion.

Concrete dilemma scenarios reveal potential conflicts of interest: Should a doctor be allowed to access all data if this could improve a diagnosis? Should an insurance company be permitted to use health-related predictions? What happens if data is incomplete, biased, or incorrect? The resulting data twins and participant feedback are displayed in a public gallery and on a feedback wall.

This joint project of ITAS and Fraunhofer IESE combines research on digital patient twins with participatory technology assessment. It strengthens health data literacy, creates opportunities to discuss future medicine in an informal setting, and introduces a wide range of societal perspectives at an early stage into the responsible, fair, and self-determined design of digital health technologies. Contributions are systematically documented, qualitatively analyzed, and prepared for research, science communication, and knowledge transfer.

Project link: https://www.hochschulwettbewerb.net/2026/meinzwillingmeineregeln/