Background

Personal health data are essential for developing new therapeutic methods, testing innovative drugs, optimizing health care or in pathology. By collecting, collating and processing health data, processes for users can be optimized, disease management carried out and medical treatment linked with research to generate new insights.

Against this backdrop, the concept of digital self-determination becomes increasingly important - the informed consent of those affected by the collection and use of health data is an essential element in the utilization of personal data. In particular, the protection of self-determination requires that those concerned should be in a position to determine for themselves the purposes for which their data is used. They should be enabled to decide independently which data they want to make available for which purposes. In view of the growing volume of data collected and the ever more complex ways in which it can be used, the parties concerned are faced with an ever-growing challenge of having to weigh up appropriately what it means to give away personal data and what consequences follow from this decision, and, ultimately, to make a self-determined decision about releasing this data.

Research questions and objectives

Therefore, the aim of the project is to structurally and pedagogically enable citizens, patients and test persons to give their self-determined consent to the collection, processing and linking of patient-related data. The project focuses on the two main areas of competence, i.e. enabling parties concerned to make informed decisions on the basis of individualized knowledge (digital and data literacy) adjusted to the individuals’ needs, and trust, i.e. the protection and security of data, the traceability of data use and the ethically responsible handling of data (data ethics).

An interdisciplinary team of scientists from the areas of media didactics, ethics, psychology, economics, and computer science will evaluate which methods and mechanisms ensure "informed consent". Furthermore, they will analyze which of these methods, by means of increasing the perceived ability to act and to decide, create trust. For this purpose, a new digital interaction concept for informed consent will be developed and researched in order to ensure self-determination in data release and traceability of data reuse.