Usability for Data Sovereignty - Evaluation of Privacy Risk Quantification Interfaces

Digital medical data is becoming widely available through the ongoing digitization efforts in the medical sector. This also leads to more personal health data available for secondary usage like medical research.
A common way to collect medical data in a privacy compliant way is through the informed consent of the affected person. While consent forms are typically paper-based, in the last years the concept of digital consent is becoming more and more common. Still, such consent forms can be very complex and overwhelming for the patient. For example, it can be hard to estimate the personal privacy impact when sharing data of rare medical conditions and user interfaces for data sharing need to be designed carefully. Privacy Risk Quantifications (PRQ) and Dynamic Consent (DC) are two tools to help patients to make a consent decision and choose the data for sharing. However, interfaces for those two technologies are not trivial to design. This paper develops two new interface variants with a focus on design guidelines and best practices for usability. To evaluate the new designs, a user study was conducted which shows improved usability in comparison to an existing interface. The Base variant is a prototype that was previously developed as a technical demonstrator for DC and PRQ without requirements for usability. The three interfaces are evaluated in a user study, which shows that the usability focus of the newer variants leads to a better rating by the test subjects compared to the basic prototype. It can also be seen that interfaces with more detailed explanations and a focus on visual comprehensive and compelling interfaces get a better usability score compared to the pure technical versions. Finally, it can be seen that interfaces for those technologies are ideally developed in an iterative design development cycle.