Abstract

Background: While an estimated 14-20% of young adults experience mental health conditions worldwide, the best strategies for prevention and management are not fully understood. The ubiquity of smartphone use among young people makes them excellent candidates for collecting data about lived experiences and their relationships to mental health. However, not much is known about the factors affecting young peoples' willingness to share information about their mental health. Objective: We aim to understand the data governance and engagement strategies influencing young peoples' (aged 16-24) participation in app-based studies of mental health. We hypothesize that the willingness to participate in research is impacted by their ability to be involved in how their data is collected, shared, and used. Methods: Here, we describe the MindKind Study, which employs mixed methods to understand the feasibility of global, smartphone-based studies of youth mental health. A pilot 12-week app-based substudy will query participants' willingness to engage with remote mental health studies. Participants will be randomized into one of four different data governance models designed to understand their preferences, as well as the acceptability of models that allow them more or less control over how their data are accessed and used. Enrolees will receive one of two different engagement strategies. A companion qualitative study will employ a deliberative democracy approach to examine the preferences, concerns and expectations of young people, with respect to remote mental health research. We also detail our engagement with young people as co-researchers in this study. This pilot study is being conducted in India, South Africa and the United Kingdom. Conclusions: This study is expected to generate new insights into the feasibility of, and best practices for, remote smartphone-based studies of mental health in youth and represents an important step toward understanding which approaches could help people better manage their mental health.

Highlights

  • Anxiety and depression have a major impact on the lives of millions of individuals, for adolescents and young people

  • We describe the MindKind study, a mixed-methods approach to understand the governance, technical and scientific feasibility of developing a global mental health database of digital data collected from young adults using smartphones

  • The overarching goals of the project are to: (a) prototype and test mechanisms to successfully empower young people to be involved in data management; (b) enable rapid and convenient data collection; (c) identify the governance model that young people support to share their data with mental health scientists; and (d) understand the factors affecting young peoples’ willingness to engage with and contribute to such a databank

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Summary

Objective

We aim to understand the data governance and engagement strategies influencing young peoples’ (aged 16-24) participation in app-based studies of mental health. We hypothesize that the willingness to participate in research is impacted by their ability to be involved in how their data is collected, shared, and used

Methods
Conclusions
Introduction
Discussion
Limitations
GBD 2019 Diseases and Injuries Collaborators
23. The MindKind Consortium: MindKind 2021 MindKind DataBank
Findings
26. Organization WH: Measuring Health and Disability
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