Today, we all are able to monitor and collect more and more personal healthcare data. However, these data is stored in distributed data silos in heterogeneous formats across different parties. Although, these data might be very helpful for researchers and medical experts, it is mostly inaccessible for them.
Researchers at the Hasso Plattner Institute designed the Data Donation Pass for citizens to enable the sovereign use of personal healthcare data. It provides a holistic view of personal healthcare data independent from source and format. Furthermore, it enables the donation of selected de-identified data, e.g. to support registered research projects. Therefore, it builds on the GesundheitsCloud as secure data integration and sharing platform, which performs required data de-identification.
Users of the Data Donation Pass app for mobile devices can define personal health interests. Based on them, relevant information and projects are carefully compiled and forwarded to the users while keeping their identity private. Participants in projects receive regular updates about how and how often their donated data was used for what purpose. Thus, they can better understand how their donation contributed to a concrete project. Nonetheless, users can redraw their personal consent to donate data at any point in time. As a result, participants keep full control of the use of data.