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 n...
| Main Authors: | , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Public Library of Science (PLoS)
2023-01-01
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| Series: | PLoS ONE |
| Online Access: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10115253/?tool=EBI |
| _version_ | 1797842451245826048 |
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| author | Solveig K. Sieberts Carly Marten Emily Bampton Elin A. Björling Anne-Marie Burn Emma Grace Carey Sonia Carlson Blossom Fernandes Jasmine Kalha Simthembile Lindani Hedwick Masomera Lakshmi Neelakantan Lisa Pasquale Swetha Ranganathan Erin Joy Scanlan Himani Shah Refiloe Sibisi Sushmita Sumant Christine Suver Yanga Thungana Meghasyam Tummalacherla Jennifer Velloza Pamela Y. Collins Mina Fazel Tamsin Ford Melvyn Freeman Soumitra Pathare Zukiswa Zingela Megan Doerr |
| author_facet | Solveig K. Sieberts Carly Marten Emily Bampton Elin A. Björling Anne-Marie Burn Emma Grace Carey Sonia Carlson Blossom Fernandes Jasmine Kalha Simthembile Lindani Hedwick Masomera Lakshmi Neelakantan Lisa Pasquale Swetha Ranganathan Erin Joy Scanlan Himani Shah Refiloe Sibisi Sushmita Sumant Christine Suver Yanga Thungana Meghasyam Tummalacherla Jennifer Velloza Pamela Y. Collins Mina Fazel Tamsin Ford Melvyn Freeman Soumitra Pathare Zukiswa Zingela Megan Doerr |
| author_sort | Solveig K. Sieberts |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-09T16:48:07Z |
| format | Article |
| id | doaj.art-83b22574b4b74034b7692e8a09914edf |
| institution | Directory Open Access Journal |
| issn | 1932-6203 |
| language | English |
| last_indexed | 2024-04-09T16:48:07Z |
| publishDate | 2023-01-01 |
| publisher | Public Library of Science (PLoS) |
| record_format | Article |
| series | PLoS ONE |
| spelling | doaj.art-83b22574b4b74034b7692e8a09914edf2023-04-22T05:31:58ZengPublic Library of Science (PLoS)PLoS ONE1932-62032023-01-01184Young people’s data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United KingdomSolveig K. SiebertsCarly MartenEmily BamptonElin A. BjörlingAnne-Marie BurnEmma Grace CareySonia CarlsonBlossom FernandesJasmine KalhaSimthembile LindaniHedwick MasomeraLakshmi NeelakantanLisa PasqualeSwetha RanganathanErin Joy ScanlanHimani ShahRefiloe SibisiSushmita SumantChristine SuverYanga ThunganaMeghasyam TummalacherlaJennifer VellozaPamela Y. CollinsMina FazelTamsin FordMelvyn FreemanSoumitra PathareZukiswa ZingelaMegan DoerrMobile 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.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10115253/?tool=EBI |
| spellingShingle | Solveig K. Sieberts Carly Marten Emily Bampton Elin A. Björling Anne-Marie Burn Emma Grace Carey Sonia Carlson Blossom Fernandes Jasmine Kalha Simthembile Lindani Hedwick Masomera Lakshmi Neelakantan Lisa Pasquale Swetha Ranganathan Erin Joy Scanlan Himani Shah Refiloe Sibisi Sushmita Sumant Christine Suver Yanga Thungana Meghasyam Tummalacherla Jennifer Velloza Pamela Y. Collins Mina Fazel Tamsin Ford Melvyn Freeman Soumitra Pathare Zukiswa Zingela Megan Doerr Young people’s data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom PLoS ONE |
| title | Young people’s data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom |
| title_full | Young people’s data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom |
| title_fullStr | Young people’s data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom |
| title_full_unstemmed | Young people’s data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom |
| title_short | Young people’s data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom |
| title_sort | young people s data governance preferences for their mental health data mindkind study findings from india south africa and the united kingdom |
| url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10115253/?tool=EBI |
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