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

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. ### Competing Interest Statement The authors have declared that no competing interests exist except for author Tamsin Ford. Tamsin Ford declares: I have read the journal's policy and have the following competing interests: I consult to Place2Be, a third sector organization providing mental health support to children, parents and staff in Schools, and am the Vice Chair of the Association of Child and Adolescent Mental Health. ### Clinical Protocols ### Funding Statement The MindKind Study was commissioned by the Mental Health Priority Area at Wellcome Trust () from Sage Bionetworks (LMM and MD). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: The MindKind Study was approved by the relevant Institutional Review Boards and Ethics Boards in the US (WIRB #20212067), UK (University of Cambridge - Department of Psychology Research Ethics Committee: Ref. PRE.2021.031 and University of Oxford: Ref. R73366/RE00), South Africa (Walter Sisulu University #029/2021 and the Department of Higher Education and Training), India (India Law Society #ILS/242/2021), and by the Health Ministry Screening Committee (HMSC) in India. All participants provided written informed consent consistent with ethics board requirements. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable. Yes Data from the quantitative study arm are available through Synapse (). Code for the enrollment website is available through Github (). Extended quotes from the qualitative study arm are available in the Supplementary Results. The materials used to inform participants prior to public deliberation sessions are available at .