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

Sieberts, Solveig K.; Marten, Carly; Bampton, Emily; Björling, Elin A.; Burn, Anne–Marie; Carey, Emma; Carlson, Sonia; Fernandes, Blossom; Kalha, Jasmine; Lindani, Simthembile; Masomera, Hedwick; Neelakantan, Lakshmi; Pasquale, Lisa; Ranganathan, Swetha; Scanlan, Erin Joy; Shah, Himani; Sibisi, Refiloe; Sumant, Sushmita; Suver, Christine; Thungana, Yanga; Tummalacherla, Meghasyam; Velloza, Jennifer; Collins, Pamela Y.; Fazel, Mina; Ford, Tamsin; Freeman, Melvyn; Pathare, Soumitra; Zingela, Zukiswa; Doerr, Megan

doi:10.1371/journal.pone.0279857

Cited by 8 publications

(8 citation statements)

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“…While complete democracy was often seen as infeasible, a review panel of either volunteers or paid community members was viewed as a good compromise, which echoes the findings of other research [ 12 ]. However, this finding conflicts with results from the quantitative arm of the MindKind Study, which found that UK participants preferred democracy or a professional review panel over a voluntary panel [ 21 ]. This may be because of the extensive educational materials provided to those in the qualitative arm of the study or because of more subtle differences in the phrasing of options.…”

Section: Discussionmentioning

confidence: 65%

“…Participants were enthusiastic about data being as accessible as possible to a variety of people because data access was seen as a public good. Our broader, global study found some differences by region, so we report findings specific to the United Kingdom [ 21 ].…”

Section: Discussionmentioning

confidence: 99%

“…The MindKind Study developed 2 animated videos, which were coproduced with YPAGs based in the United Kingdom, India, and South Africa and voiced by our professional youth advisor [ 21 , 22 ]. The educational videos were sent to participants 1 to 2 weeks before their scheduled session to ensure that participants had a basic understanding of the topics to be covered.…”

Section: Methodsmentioning

confidence: 99%

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Preferences on Governance Models for Mental Health Data: Qualitative Study With Young People

Carey,

Adeyemi,

Neelakantan

et al. 2024

JMIR Form Res

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Background Improving access to mental health data to accelerate research and improve mental health outcomes is a potentially achievable goal given the substantial data that can now be collected from mobile devices. Smartphones can provide a useful mechanism for collecting mental health data from young people, especially as their use is relatively ubiquitous in high-resource settings such as the United Kingdom and they have a high capacity to collect active and passive data. This raises the interesting opportunity to establish a large bank of mental health data from young people that could be accessed by researchers worldwide, but it is important to clarify how to ensure that this is done in an appropriate manner aligned with the values of young people. Objective In this study, we discussed the preferences of young people in the United Kingdom regarding the governance, sharing, and use of their mental health data with the establishment of a global data bank in mind. We aimed to determine whether young people want and feel safe to share their mental health data; if so, with whom; and their preferences in doing so. Methods Young people (N=46) were provided with 2 modules of educational material about data governance models and background in scientific research. We then conducted 2-hour web-based group sessions using a deliberative democracy methodology to reach a consensus where possible. Findings were analyzed using the framework method. Results Young people were generally enthusiastic about contributing data to mental health research. They believed that broader availability of mental health data could be used to discover what improves or worsens mental health and develop new services to support young people. However, this enthusiasm came with many concerns and caveats, including distributed control of access to ensure appropriate use, distributed power, and data management that included diverse representation and sufficient ethical training for applicants and data managers. Conclusions Although it is feasible to use smartphones to collect mental health data from young people in the United Kingdom, it is essential to carefully consider the parameters of such a data bank. Addressing and embedding young people’s preferences, including the need for robust procedures regarding how their data are managed, stored, and accessed, will set a solid foundation for establishing any global data bank.

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Section: Discussionmentioning

confidence: 65%

Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

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Preferences on Governance Models for Mental Health Data: Qualitative Study With Young People

Carey,

Adeyemi,

Neelakantan

et al. 2024

JMIR Form Res

Self Cite

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“…The MindKind Study was a mixed methods international collaboration to investigate the feasibility of a global databank to derive mental health insights [10]. The MindKind Study included a quantitative arm that recruited participants to collect their mental health data via a mobile application and a qualitative public deliberation arm, which was conducted in concert with sites in India, South Africa, and the United Kingdom (UK).…”

Section: Introductionmentioning

confidence: 99%

Online, remote public deliberation across three continents: learnings from the MindKind Study (Preprint)

Marten,

Doerr

2024

Preprint

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BACKGROUND Public deliberation is a qualitative research method that has successfully been used to solicit lay people’s perspectives on health ethics topics, but questions remain as to whether this traditionally in-person method translates into the online context. The MindKind Study conducted public deliberation sessions to gauge the concerns and aspirations of young people in India, South Africa, and the United Kingdom in regard to a prospective mental health databank. This paper details our adaptations to and evaluation of the public deliberation method in the online context, especially in the presence of a digital divide. OBJECTIVE The purpose of this paper is to assess the quality of online public deliberation and share emerging learnings in a remote disseminated qualitative research context. METHODS We convened participants for 2 hours of structured deliberation over an online video conferencing platform. We provided participants with multimedia informational materials describing different ways to manage mental health data. We analyzed the quality of online public deliberation in variable resource settings on the basis of (1) equal participation, (2) respect for the opinions of others, (3) adoption of a societal perspective, and (4) reasoned justification of ideas. In order to assess the depth of comprehension of informational materials, we used qualitative data pertaining directly to the material provided. RESULTS The sessions were broadly of high quality, although some sessions suffered from unstable internet connection and resulting multimodal participation, complicating our ability to perform a quality assessment. English-speaking participants displayed a deep understanding of complex informational materials. We found that participants were particularly sensitive to linguistic and semiotic choices in informational materials. A more fundamental barrier to understanding was encountered by participants who utilized materials translated from English. CONCLUSIONS Although online public deliberation may produce similar quality outcomes to in-person public deliberation, researchers who utilize remote methods should plan for technological and linguistic barriers when working with a multinational population. Our recommendations to researchers include budgetary planning, logistical considerations, and ensuring participants’ psychological safety.

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“…We note that the findings discussed in this manuscript do not include any data from the main MindKind study or any of the randomized arms. The objective of this manuscript was to describe the impact of coproduction with youth on different stakeholder groups [ 32 ]. Coproduction with youth was designed to influence both the qualitative and quantitative study arms (ie, youth were coresearchers), and we evaluated such impact of youth acting as coresearchers on key stakeholder groups.…”

Section: Introductionmentioning

confidence: 99%

Evidencing the Impact of Web-Based Coproduction With Youth on Mental Health Research: Qualitative Findings From the MindKind Study

Fernandes¹,

Neelakantan²,

Shah³

et al. 2023

JMIR Public Health Surveill

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Background Public involvement in research is a growing phenomenon as well as a condition of research funding, and it is often referred to as coproduction. Coproduction involves stakeholder contributions at every stage of research, but different processes exist. However, the impact of coproduction on research is not well understood. Web-based young people’s advisory groups (YPAGs) were established as part of the MindKind study at 3 sites (India, South Africa, and the United Kingdom) to coproduce the wider research study. Each group site, led by a professional youth advisor, conducted all youth coproduction activities collaboratively with other research staff. Objective This study aimed to evaluate the impact of youth coproduction in the MindKind study. Methods To measure the impact of web-based youth coproduction on all stakeholders, the following methods were used: analysis of project documents, capturing the views of stakeholders using the Most Significant Change technique, and impact frameworks to assess the impact of youth coproduction on specific stakeholder outcomes. Data were analyzed in collaboration with researchers, advisors, and YPAG members to explore the impact of youth coproduction on research. Results The impact was recorded on 5 levels. First, at the paradigmatic level, a novel method of conducting research allowed for a widely diverse group of YPAG representations, influencing study priorities, conceptualization, and design. Second, at the infrastructural level, the YPAG and youth advisors meaningfully contributed to the dissemination of materials; infrastructural constraints of undertaking coproduction were also identified. Third, at the organizational level, coproduction necessitated implementing new communication practices, such as a web-based shared platform. This meant that materials were easily accessible to the whole team and communication streams remained consistent. Fourth, at the group level, authentic relationships developed between the YPAG members, advisors, and the rest of the team, facilitated by regular web-based contact. Finally, at the individual level, participants reported enhanced insights into mental well-being and appreciation for the opportunity to engage in research. Conclusions This study revealed several factors that shape the creation of web-based coproduction, with clear positive outcomes for advisors, YPAG members, researchers, and other project staff. However, several challenges of coproduced research were also encountered in multiple contexts and amid pressing timelines. For systematic reporting of the impact of youth coproduction, we propose that monitoring, evaluation, and learning systems be designed and implemented early.

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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

Cited by 8 publications

References 25 publications

Preferences on Governance Models for Mental Health Data: Qualitative Study With Young People

Preferences on Governance Models for Mental Health Data: Qualitative Study With Young People

Online, remote public deliberation across three continents: learnings from the MindKind Study (Preprint)

Evidencing the Impact of Web-Based Coproduction With Youth on Mental Health Research: Qualitative Findings From the MindKind Study

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