In the second episode, we take a look at a specific domain where data sharing is both necessary and difficult, and where new forms of data sharing are being discussed and tested. We focus on health data and data use in medicine. We talk about the opportunities and challenges associated with this. On the one hand, data sharing is expected to drive major innovations in medical research and contribute to improving healthcare. On the other hand, health data is extremely sensitive, meaning it is clearly linked to individuals and can cause great harm if it falls into the wrong hands. This difficult balancing act is particularly evident when it comes to rare diseases. Various projects are attempting to master this challenge, and we spoke to two of them. The Independent Trust Agency in Medicine at TU Dresden aims to make health data collected at the university hospital accessible for medical research while protecting the legitimate interests of those providing the data. The TrustNShare project has developed a data trustee in the form of an app. The aim is to bring together data providers who want to share their health data – in some cases for a fee – and data users who want to conduct research with this data.
ShareCast Episode 2: Health Data, 22 July 2025
Guests
Prof. Dr. Thomas O. F. Wagner is an internist, pulmonologist and professor at the University Hospital of the Goethe Universität Frankfurt. There he heads the Reference Center for Rare Diseases.
Philipp Heinrich is head and consultant of the Independent Trustee Office in the field of medicine at the Technische Universität Dresden.
Prof. Dr. Cord Spreckelsen is Professor of Medical Informatics at the Friedrich Schiller Universität Jena and was head of the TrustNShare project. He is currently also involved in the AVATAR project.
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