Mobile devices offer a scalable opportunity to collect longitudinal data that facilitate advances in mental health treatment to address the burden of mental health conditions in young people. Sharing these data with the research community is critical to gaining maximal value from rich data of this nature. However, the highly personal nature of the data necessitates understanding the conditions under which young people are willing to share them. To answer this question, we developed the MindKind Study, a multinational, mixed methods study that solicits young people’s preferences for how their data are governed and quantifies potential participants’ willingness to join under different conditions. We employed a community-based participatory approach, involving young people as stakeholders and co-researchers. At sites in India, South Africa, and the UK, we enrolled 3575 participants ages 16–24 in the mobile app-mediated quantitative study and 143 participants in the public deliberation-based qualitative study. We found that while youth participants have strong preferences for data governance, these preferences did not translate into (un)willingness to join the smartphone-based study. Participants grappled with the risks and benefits of participation as well as their desire that the “right people” access their data. Throughout the study, we recognized young people’s commitment to finding solutions and co-producing research architectures to allow for more open sharing of mental health data to accelerate and derive maximal benefit from research.

Mobile devices offer a scalable opportunity to collect longitudinal data that facilitate advances in mental health treatment to address the burden of mental health conditions in young people. Sharing these data with the research community is critical to gaining maximal value from rich data of this nature. However, the highly personal nature of the data necessitates understanding the conditions under which young people are willing to share them. To answer this question, we developed the MindKind Study, a multinational, mixed methods study that solicits young people’s preferences for how their data are governed and quantifies potential participants’ willingness to join under different conditions. We employed a community-based participatory approach, involving young people as stakeholders and co-researchers. At sites in India, South Africa, and the UK, we enrolled 3575 participants ages 16-24 in the mobile app-mediated quantitative study and 143 participants in the public deliberation-based qualitative study. We found that while youth participants have strong preferences for data governance, these preferences did not translate into (un)willingness to join the smartphone-based study. Participants grappled with the risks and benefits of participation as well as their desire that the “right people” access their data. Throughout the study, we recognized young people’s commitment to finding solutions and co-producing research architectures to allow for more open sharing of mental health data to accelerate and derive maximal benefit from research.

Background: The global ubiquity of smartphone use among young people makes them excellent candidates for collecting data about individuals’ lived experiences and their relationships to mental health. However, to-date most app-based studies have been conducted in North America and Europe. Understanding young people’s willingness to participate in app-based research and share information about their mental health is key to understanding the feasibility of broad-scale research using these approaches. We aimed to understand the recruitment and engagement approaches influencing young peoples’ (aged 16-24) participation in app-based studies of mental health. We hypothesised that providing a choice of study topics will improve engagement. Methods: We developed a 12-week pilot study of mental health implemented in the MindKind app, designed to assess participants’ willingness to engage in remote mental health research, both actively and passively. Enrollees were randomised to one of two different engagement arms, either selecting their study topics of interest or receiving a fixed assignment of study topics, in order to understand the role of choice in study engagement. This pilot study was conducted in India, South Africa, and the United Kingdom. Different recruitment strategies were employed in each location. Results: The MindKind Study recruited 1,034 (India), 932 (South Africa) and 1,609 (UK) participants. Engagement differed by country with median days of activity = 2, 6, and 11 for India, South Africa, and UK, respectively. Most surprisingly, participants given a choice of study topics showed lower engagement relative to participants assigned to fixed topics (Hazard Ratio = 0.82). Conclusions: We observe equal or better engagement compared to previous comparable app-based studies of mental health. While providing participants a choice of study topics showed no advantage in our study, our qualitative analysis of participant feedback provides additional suggestions for improving engagement in future studies.