Wie wird die Datenspende zum Erfolgsmodell? Workshopbericht zu effektiven Kommunikations- und Vermittlungsstrategien für Bürger:innen und Patient:innen

The use of the German national electronic health record (ePA) for data donation holds great potential for medical research but also places high demands on information, communication, and public acceptance. As part of an interdisciplinary workshop at the 69th Annual Conference of the German Association for Medical Informatics, Biometry and Epidemiology (GMDS) in Dresden, experts in medical informatics, science communication, and patient advocacy discussed key questions regarding how to communicate the concept of data donation to citizens, together with the audience. The goal was to identify the conditions under which informed and autonomous decisions about the voluntary use of health data for research purposes can be made. The focus was on questions such as: who provides information about data donation, how can trust in institutions be strengthened, how can benefits and risks be communicated in an understandable way, and how can different target groups be effectively reached. Presentations and discussions highlighted the need for a wide range of low-threshold, transparent, and target group-specific information offerings provided by credible actors. In doing so, it is essential to promote digital health literacy, reduce barriers to access, and empower citizens not only technically but also in terms of communication. This contribution underscores that effective communication about data donation is a key prerequisite for public acceptance and equitable participation in digital health research.