Understanding Participant Needs for Engagement and Attitudes towards Passive Sensing in Remote Digital Health Studies

Digital psychiatry is a rapidly growing area of research. Mobile assessment, including passive sensing, could improve research into human behavior and may afford opportunities for rapid treatment delivery. However, retention is poor in remote studies of depressed populations in which frequent assessment and passive monitoring are required. To improve engagement and understanding participant needs overall, we conducted semi-structured interviews with 20 people representative of a depressed population in a major metropolitan area. These interviews elicited feedback on strategies for long-term remote research engagement and attitudes towards passive data collection. Our results found participants were uncomfortable sharing vocal samples, need researchers to take a more active role in supporting their understanding of passive data collection, and wanted more transparency on how data were to be used in research. Despite these findings, participants trusted researchers with the collection of passive data. They further indicated that long term study retention could be improved with feedback and return of information based on the collected data. We suggest that researchers consider a more educational consent process, giving participants a choice about the types of data they share in the design of digital health apps, and consider supporting feedback in the design to improve engagement.