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

PLOS ONE RESEARCH ARTICLE Young people’s data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom a1111111111 a1111111111 a1111111111 a1111111111 a1111111111 OPEN ACCESS Citation: Sieberts SK, Marten C, Bampton E, Björling EA, Burn A-M, Carey EG, et al. (2023) Young people’s data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom. PLoS ONE 18(4): e0279857. https://doi.org/ 10.1371/journal.pone.0279857 Editor: André Ramalho, FMUP: Universidade do Porto Faculdade de Medicina, PORTUGAL Received: December 16, 2022 Solveig K. Sieberts1‡, Carly Marten ID1‡, Emily Bampton2, Elin A. Björling3, AnneMarie Burn ID4, Emma Grace Carey ID4, Sonia Carlson ID1, Blossom Fernandes2, Jasmine Kalha5, Simthembile Lindani6, Hedwick Masomera6,7, Lakshmi Neelakantan2, Lisa Pasquale1, Swetha Ranganathan5, Erin Joy Scanlan1, Himani Shah5, Refiloe Sibisi8,9, Sushmita Sumant5, Christine Suver1, Yanga Thungana ID6, Meghasyam Tummalacherla1, Jennifer Velloza ID10,11, Pamela Y. Collins11,12, Mina Fazel2, Tamsin Ford4,13, Melvyn Freeman14,15, Soumitra Pathare5, Zukiswa Zingela7, The MindKind Consortium¶, Megan Doerr ID1* 1 Sage Bionetworks, Seattle, Washington, United States of America, 2 Department of Psychiatry, University of Oxford, Oxford, Oxfordshire, United Kingdom, 3 Human Centered Design and Engineering, University of Washington, Seattle, Washington, United States of America, 4 Department of Psychiatry, University of Cambridge, Cambridge, Cambridgeshire, United Kingdom, 5 Centre for Mental Health Law & Policy, Indian Law Society, Pune, Maharashtra, India, 6 Department of Psychiatry, Walter Sisulu University, Eastern Cape, South Africa, 7 Nelson Mandela University, Gqeberha, Eastern Cape, South Africa, 8 Activate Change Drivers ZA, Johannesburg, Gauteng, South Africa, 9 University of Johannesburg, Johannesburg, Gauteng, South Africa, 10 Department of Epidemiology & Biostatistics, University of California San Francisco, San Francisco, California, United States of America, 11 Department of Global Health, University of Washington, Seattle, Washington, United States of America, 12 Department of Psychiatry and Behavioral Sciences, University of Washington, Seattle, Washington, United States of America, 13 Cambridgeshire and Peterborough Foundation NHS Trust, Fulbourn, Cambridgeshire, United Kingdom, 14 University of Stellenbosch, Stellenbosch, Western Cape, South Africa, 15 Higher Health, Centurion, Gauteng, South Africa ‡ SKS and CM are joint first authors on this work. ¶ Membership of the MindKind Consortium is provided in the Acknowledgments. * Accepted: April 3, 2023 Published: April 19, 2023 Peer Review History: PLOS recognizes the benefits of transparency in the peer review process; therefore, we enable the publication of all of the content of peer review and author responses alongside final, published articles. The editorial history of this article is available here: https://doi.org/10.1371/journal.pone.0279857 Copyright: © 2023 Sieberts et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Data Availability Statement: Data from the quantitative arm are available through Synapse (www.synapse.org/MindKind). This includes the 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 appmediated quantitative study and 143 participants in the public deliberation-based qualitative study. We found that while youth participants have strong preferences for data governance, PLOS ONE | https://doi.org/10.1371/journal.pone.0279857 April 19, 2023 1 / 23 PLOS ONE Participant preferences (https://doi.org/10.7303/ syn51225257), Participant acceptability (https:// doi.org/10.7303/syn51225253) and Participant votes (https://doi.org/10.7303/syn51225260) data. Code for the enrollment website is available through Github (https://github.com/SageBionetworks/GlobalMentalHealthDatabank). Extended quotes from the qualitative arm are available in the Supporting Results. The materials used to inform participants prior to public deliberation sessions are available at https://doi. org/10.7303/syn35371551. Funding: The MindKind Study was commissioned by the Mental Health Priority Area at Wellcome Trust (https://wellcome.org/) 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. Competing interests: 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. Global youth’s data governance preferences for their mental health data 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. Introduction Unprecedented opportunities to better understand behavioral and emotional trajectories are now available to researchers from the sheer quantity of data that can be collected through mobile devices. Unlike in-person clinical data collection, remote research through smartphone apps on mobile devices can collect frequent, longitudinal data about lived experience directly from young people, given how readily this generation has embraced the use of smartphone devices [1, 2]. Three quarters of people af (...truncated)