TY - JOUR
T1 - Young people’s data governance preferences for their mental health data
T2 - MindKind Study findings from India, South Africa, and the United Kingdom
AU - The MindKind Consortium
AU - Sieberts, Solveig K.
AU - Marten, Carly
AU - Bampton, Emily
AU - Björling, Elin A.
AU - Burn, Anne Marie
AU - Carey, Emma Grace
AU - Carlson, Sonia
AU - Fernandes, Blossom
AU - Kalha, Jasmine
AU - Lindani, Simthembile
AU - Masomera, Hedwick
AU - Neelakantan, Lakshmi
AU - Pasquale, Lisa
AU - Ranganathan, Swetha
AU - Scanlan, Erin Joy
AU - Shah, Himani
AU - Sibisi, Refiloe
AU - Sumant, Sushmita
AU - Suver, Christine
AU - Thungana, Yanga
AU - Tummalacherla, Meghasyam
AU - Velloza, Jennifer
AU - Collins, Pamela Y.
AU - Fazel, Mina
AU - Ford, Tamsin
AU - Freeman, Melvyn
AU - Pathare, Soumitra
AU - Zingela, Zukiswa
AU - Doerr, Megan
AU - Adeyemi, Faith Oluwasemilore
AU - Areán, Patricia A.
AU - Bradic, Ljubomir
AU - Concepcion, Tessa
AU - Damji, Meera
AU - Dunbar, Julia C.
AU - Finchilescu, Gillian
AU - Griffith Fillipo, Isabell R.
AU - Hodgson, Jay
AU - Karani, Minal
AU - Kellen, Michael R.
AU - Kemp, Christopher G.
AU - Mangravite, Lara M.
AU - Mata-Greve, Felicia
AU - Moore, Emily
AU - Mounts, Erin
AU - Omberg, Larsson
AU - Sams, Nichole
AU - Short, Sotirios
AU - Simon, Stockard
AU - Van Vught, Chandre
N1 - Funding Information:
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.
Data Availability Statement:
Data from the quantitative arm are available through Synapse (www.synapse.org/MindKind). This includes the 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.
PY - 2023/4/19
Y1 - 2023/4/19
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85153121744&partnerID=8YFLogxK
U2 - 10.1371/journal.pone.0279857
DO - 10.1371/journal.pone.0279857
M3 - Article
C2 - 37074995
AN - SCOPUS:85153121744
SN - 1932-6203
VL - 18
JO - PLoS ONE
JF - PLoS ONE
IS - 4
M1 - e0279857
ER -
