Young people’s data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom

Abstract

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.

Current evidence and opportunities in child and adolescent public mental health: a research review

“…For example, computerised adaptive testing can enable more efficient assessment by reducing the number of questions needed (Stochl, Ford, Perez, & Jones, 2021), whilst administrative record linkage can facilitate integration of cross‐sector data that supports a broader lens within child and adolescent mental health (Ford et al., 2021). Finally, better access to existing data encouraged by open science philosophies and federated models of access through secure servers further removes barriers to research and democratises data access (Toga et al., 2023) – a principle young people have highlighted as important in the curation of their data (Sieberts et al., 2023). With further research integration across the applied and social sciences, the tools for in‐depth exploration of meaning and location will extend the lens of both quantitative and qualitative enquiry through, for example, the art of anthropological ethnography, the frameworks of hard and soft infrastructure examined in political science, the measurement of quality of life in economics and the investion of interrelationships in physical and human geography.…”

Current evidence and opportunities in child and adolescent public mental health: a research review

“…For example, computerised adaptive testing can enable more efficient assessment by reducing the number of questions needed (Stochl, Ford, Perez, & Jones, 2021), whilst administrative record linkage can facilitate integration of cross-sector data that supports a broader lens within child and adolescent mental health (Ford et al, 2021). Finally, better access to existing data encouraged by open science philosophies and federated models of access through secure servers further removes barriers to research and democratises data access (Toga et al, 2023)a principle young people have highlighted as important in the curation of their data (Sieberts et al, 2023). With further research integration across the applied and social sciences, the tools for in-depth exploration of meaning and location will extend the lens of both quantitative and qualitative enquiry through, for example, the art of anthropological ethnography, the frameworks of hard and soft infrastructure examined in political science, the measurement of quality of life in economics and the investion of interrelationships in physical and human geography.…”