Donating Health Data to Research: Influential Characteristics of Individuals Engaging in Self-Tracking

Abstract

Health self-tracking is an ongoing trend as software and hardware evolve, making the collection of personal data not only fun for users but also increasingly interesting for public health research. In a quantitative approach we studied German health self-trackers (N = 919) for differences in their data disclosure behavior by comparing data showing and sharing behavior among peers and their willingness to donate data to research. In addition, we examined user characteristics that may positively influence willingness to make the self-tracked data available to research and propose a framework for structuring research related to self-measurement. Results show that users’ willingness to disclose data as a “donation” more than doubled compared to their “sharing” behavior (willingness to donate = 4.5/10; sharing frequency = 2.09/10). Younger men (up to 34 years), who record their vital signs daily, are less concerned about privacy, regularly donate money, and share their data with third parties because they want to receive feedback, are most likely to donate data to research and are thus a promising target audience for health data donation appeals. The paper adds to qualitative accounts of self-tracking but also engages with discussions around data sharing and privacy.