Enhancing citizens trust in technologies for data donation in clinical research: validation of a design prototype

Mobile phones, wearable trackers and Internet of Things devices continuously produce data about our health and lifestyle that can be used for medical research. However, how data is accessed, by whom and for what purpose is not always understood. This lack of transparency undermines citizens trust in the use of such technologies for research purposes. This paper proposes a set of 6 use cases and related mock-up interfaces for citizen science, mobile-based health research: “Curated information about the institution”, “Sequential consent of shared data”, “Updates from the institution”, “Privacy notifications”, “Overview of donated data” and “Personal impact in medical research”. Interviews and Kano analysis of the interfaces with 6 prospective users show that all except “Privacy notifications” are perceived as important and beneficial for increasing users’ trust. The defined use cases can guide the development of future data collection platforms.