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...
Ausführliche Beschreibung
Gespeichert in:
| Autor*in: |
Solveig K Sieberts [verfasserIn] Carly Marten [verfasserIn] Emily Bampton [verfasserIn] Elin A Björling [verfasserIn] Anne-Marie Burn [verfasserIn] Emma Grace Carey [verfasserIn] Sonia Carlson [verfasserIn] Blossom Fernandes [verfasserIn] Jasmine Kalha [verfasserIn] Simthembile Lindani [verfasserIn] Hedwick Masomera [verfasserIn] Lakshmi Neelakantan [verfasserIn] Lisa Pasquale [verfasserIn] Swetha Ranganathan [verfasserIn] Erin Joy Scanlan [verfasserIn] Himani Shah [verfasserIn] Refiloe Sibisi [verfasserIn] Sushmita Sumant [verfasserIn] Christine Suver [verfasserIn] Yanga Thungana [verfasserIn] Meghasyam Tummalacherla [verfasserIn] Jennifer Velloza [verfasserIn] Pamela Y Collins [verfasserIn] Mina Fazel [verfasserIn] Tamsin Ford [verfasserIn] Melvyn Freeman [verfasserIn] Soumitra Pathare [verfasserIn] Zukiswa Zingela [verfasserIn] MindKind Consortium [verfasserIn] Megan Doerr [verfasserIn] |
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| Format: |
E-Artikel |
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| Sprache: |
Englisch |
| Erschienen: |
2023 |
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| Übergeordnetes Werk: |
In: PLoS ONE - Public Library of Science (PLoS), 2007, 18(2023), 4, p e0279857 |
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| Übergeordnetes Werk: |
volume:18 ; year:2023 ; number:4, p e0279857 |
| Links: |
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| DOI / URN: |
10.1371/journal.pone.0279857 |
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DOAJ089709810 |
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| 520 | |a 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. | ||
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10.1371/journal.pone.0279857 doi (DE-627)DOAJ089709810 (DE-599)DOAJb7e1caa878ce429eb10da8637575d98b DE-627 ger DE-627 rakwb eng Solveig K Sieberts verfasserin aut Young people's data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom. 2023 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier 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. Medicine R Science Q Carly Marten verfasserin aut Emily Bampton verfasserin aut Elin A Björling verfasserin aut Anne-Marie Burn verfasserin aut Emma Grace Carey verfasserin aut Sonia Carlson verfasserin aut Blossom Fernandes verfasserin aut Jasmine Kalha verfasserin aut Simthembile Lindani verfasserin aut Hedwick Masomera verfasserin aut Lakshmi Neelakantan verfasserin aut Lisa Pasquale verfasserin aut Swetha Ranganathan verfasserin aut Erin Joy Scanlan verfasserin aut Himani Shah verfasserin aut Refiloe Sibisi verfasserin aut Sushmita Sumant verfasserin aut Christine Suver verfasserin aut Yanga Thungana verfasserin aut Meghasyam Tummalacherla verfasserin aut Jennifer Velloza verfasserin aut Pamela Y Collins verfasserin aut Mina Fazel verfasserin aut Tamsin Ford verfasserin aut Melvyn Freeman verfasserin aut Soumitra Pathare verfasserin aut Zukiswa Zingela verfasserin aut MindKind Consortium verfasserin aut Megan Doerr verfasserin aut In PLoS ONE Public Library of Science (PLoS), 2007 18(2023), 4, p e0279857 (DE-627)523574592 (DE-600)2267670-3 19326203 nnns volume:18 year:2023 number:4, p e0279857 https://doi.org/10.1371/journal.pone.0279857 kostenfrei https://doaj.org/article/b7e1caa878ce429eb10da8637575d98b kostenfrei https://doi.org/10.1371/journal.pone.0279857 kostenfrei https://doaj.org/toc/1932-6203 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_34 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_171 GBV_ILN_206 GBV_ILN_213 GBV_ILN_224 GBV_ILN_230 GBV_ILN_235 GBV_ILN_285 GBV_ILN_293 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2006 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2031 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2057 GBV_ILN_2061 GBV_ILN_2111 GBV_ILN_2113 GBV_ILN_2190 GBV_ILN_2522 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4335 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 18 2023 4, p e0279857 |
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10.1371/journal.pone.0279857 doi (DE-627)DOAJ089709810 (DE-599)DOAJb7e1caa878ce429eb10da8637575d98b DE-627 ger DE-627 rakwb eng Solveig K Sieberts verfasserin aut Young people's data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom. 2023 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier 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. Medicine R Science Q Carly Marten verfasserin aut Emily Bampton verfasserin aut Elin A Björling verfasserin aut Anne-Marie Burn verfasserin aut Emma Grace Carey verfasserin aut Sonia Carlson verfasserin aut Blossom Fernandes verfasserin aut Jasmine Kalha verfasserin aut Simthembile Lindani verfasserin aut Hedwick Masomera verfasserin aut Lakshmi Neelakantan verfasserin aut Lisa Pasquale verfasserin aut Swetha Ranganathan verfasserin aut Erin Joy Scanlan verfasserin aut Himani Shah verfasserin aut Refiloe Sibisi verfasserin aut Sushmita Sumant verfasserin aut Christine Suver verfasserin aut Yanga Thungana verfasserin aut Meghasyam Tummalacherla verfasserin aut Jennifer Velloza verfasserin aut Pamela Y Collins verfasserin aut Mina Fazel verfasserin aut Tamsin Ford verfasserin aut Melvyn Freeman verfasserin aut Soumitra Pathare verfasserin aut Zukiswa Zingela verfasserin aut MindKind Consortium verfasserin aut Megan Doerr verfasserin aut In PLoS ONE Public Library of Science (PLoS), 2007 18(2023), 4, p e0279857 (DE-627)523574592 (DE-600)2267670-3 19326203 nnns volume:18 year:2023 number:4, p e0279857 https://doi.org/10.1371/journal.pone.0279857 kostenfrei https://doaj.org/article/b7e1caa878ce429eb10da8637575d98b kostenfrei https://doi.org/10.1371/journal.pone.0279857 kostenfrei https://doaj.org/toc/1932-6203 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_34 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_171 GBV_ILN_206 GBV_ILN_213 GBV_ILN_224 GBV_ILN_230 GBV_ILN_235 GBV_ILN_285 GBV_ILN_293 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2006 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2031 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2057 GBV_ILN_2061 GBV_ILN_2111 GBV_ILN_2113 GBV_ILN_2190 GBV_ILN_2522 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4335 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 18 2023 4, p e0279857 |
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10.1371/journal.pone.0279857 doi (DE-627)DOAJ089709810 (DE-599)DOAJb7e1caa878ce429eb10da8637575d98b DE-627 ger DE-627 rakwb eng Solveig K Sieberts verfasserin aut Young people's data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom. 2023 Text txt rdacontent Computermedien c rdamedia Online-Ressource cr rdacarrier 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. Medicine R Science Q Carly Marten verfasserin aut Emily Bampton verfasserin aut Elin A Björling verfasserin aut Anne-Marie Burn verfasserin aut Emma Grace Carey verfasserin aut Sonia Carlson verfasserin aut Blossom Fernandes verfasserin aut Jasmine Kalha verfasserin aut Simthembile Lindani verfasserin aut Hedwick Masomera verfasserin aut Lakshmi Neelakantan verfasserin aut Lisa Pasquale verfasserin aut Swetha Ranganathan verfasserin aut Erin Joy Scanlan verfasserin aut Himani Shah verfasserin aut Refiloe Sibisi verfasserin aut Sushmita Sumant verfasserin aut Christine Suver verfasserin aut Yanga Thungana verfasserin aut Meghasyam Tummalacherla verfasserin aut Jennifer Velloza verfasserin aut Pamela Y Collins verfasserin aut Mina Fazel verfasserin aut Tamsin Ford verfasserin aut Melvyn Freeman verfasserin aut Soumitra Pathare verfasserin aut Zukiswa Zingela verfasserin aut MindKind Consortium verfasserin aut Megan Doerr verfasserin aut In PLoS ONE Public Library of Science (PLoS), 2007 18(2023), 4, p e0279857 (DE-627)523574592 (DE-600)2267670-3 19326203 nnns volume:18 year:2023 number:4, p e0279857 https://doi.org/10.1371/journal.pone.0279857 kostenfrei https://doaj.org/article/b7e1caa878ce429eb10da8637575d98b kostenfrei https://doi.org/10.1371/journal.pone.0279857 kostenfrei https://doaj.org/toc/1932-6203 Journal toc kostenfrei GBV_USEFLAG_A SYSFLAG_A GBV_DOAJ GBV_ILN_11 GBV_ILN_20 GBV_ILN_22 GBV_ILN_23 GBV_ILN_24 GBV_ILN_31 GBV_ILN_34 GBV_ILN_39 GBV_ILN_40 GBV_ILN_60 GBV_ILN_62 GBV_ILN_63 GBV_ILN_65 GBV_ILN_69 GBV_ILN_70 GBV_ILN_73 GBV_ILN_74 GBV_ILN_95 GBV_ILN_105 GBV_ILN_110 GBV_ILN_151 GBV_ILN_161 GBV_ILN_170 GBV_ILN_171 GBV_ILN_206 GBV_ILN_213 GBV_ILN_224 GBV_ILN_230 GBV_ILN_235 GBV_ILN_285 GBV_ILN_293 GBV_ILN_370 GBV_ILN_602 GBV_ILN_702 GBV_ILN_2001 GBV_ILN_2003 GBV_ILN_2005 GBV_ILN_2006 GBV_ILN_2008 GBV_ILN_2009 GBV_ILN_2010 GBV_ILN_2011 GBV_ILN_2014 GBV_ILN_2015 GBV_ILN_2020 GBV_ILN_2021 GBV_ILN_2025 GBV_ILN_2031 GBV_ILN_2038 GBV_ILN_2044 GBV_ILN_2048 GBV_ILN_2050 GBV_ILN_2055 GBV_ILN_2056 GBV_ILN_2057 GBV_ILN_2061 GBV_ILN_2111 GBV_ILN_2113 GBV_ILN_2190 GBV_ILN_2522 GBV_ILN_4012 GBV_ILN_4037 GBV_ILN_4112 GBV_ILN_4125 GBV_ILN_4126 GBV_ILN_4249 GBV_ILN_4305 GBV_ILN_4306 GBV_ILN_4307 GBV_ILN_4313 GBV_ILN_4322 GBV_ILN_4323 GBV_ILN_4324 GBV_ILN_4325 GBV_ILN_4335 GBV_ILN_4338 GBV_ILN_4367 GBV_ILN_4700 AR 18 2023 4, p e0279857 |
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Solveig K Sieberts |
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Young people's data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom |
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young people's data governance preferences for their mental health data: mindkind study findings from india, south africa, and the united kingdom |
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Young people's data governance preferences for their mental health data: MindKind Study findings from India, South Africa, and the United Kingdom. |
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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. |
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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. |
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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. |
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