The MindKind Study is an international feasibility study that enables the youth to work directly with mental health researchers to better understand how young people can manage their mental health.
Why MindKind Study?
Young people around the world commonly experience anxiety and depression, but it can be hard to identify how each person can best manage their own mental health. Data sharing models haven’t always included everyone who should be part of the conversation. Persons with lived experience, advocates and community-based organizations have asked for prioritizing participant involvement. There are a wide range of research opportunities that are only possible with direct involvement of individuals contributing to the data.
The databank project aims to respond to this need by actively involving those who provide the data, in this case, the youth.
How are we addressing the issue?
The MindKind Study, a feasibility study, hopes to enable youth from the United Kingdom, South Africa, and India to work directly with mental health researchers to better understand how young people can manage their mental health.
The Centre for Mental Health Law & Policy at the Indian Law Society is collaborating with Sage Bionetworks, along with researchers from Oxford University, University of Cambridge, University of Washington, Walter Sisulu University, Higher Health, in this effort to pilot a mental health databank. This project is funded by the mental health priority area at the Wellcome Trust to enable their work to identify the next generation of treatments and approaches to prevent, intervene, manage and stop relapse of anxiety and depression in young people.
The researchers of this project will engage youth in co-designing to build the blueprint for a global mental health database that directly collects data through smartphones and provides insights to youth around the world. Since youth involvement is crucial to sustaining longitudinal data collection for a databank, we will test how youth wish to interact with and use this system to advance broader understanding of mental health. In this respect, we will investigate youth involvement strategies and acceptable participant-led data governance models. In other words, we will address questions like: What value do youth find in participating in this kind of databank and how does that vary across individuals? Is youth involvement in research impacted by their control over how their data is collected, shared, and used? What levels of oversight do they wish to have? Do these considerations have an impact on what types of data they are willing to contribute? What do they wish to do with these data and what support do they need to achieve their goals? How do the preferences of youth and the preferences of researchers intersect?
Additionally, along with technical and governance feasibility, the project seeks to understand regulatory concerns of data sharing and privacy for a global databank approach.
What is the potential impact?
The overall goal is to create a databank that can be used in the future to help improve the ways we treat and prevent mental health problems like anxiety and depression for young people living in different countries around the world. Specifically, we hope that the databank can answer the questions, “What kinds of treatments and prevention activities for anxiety and depression really work, who do they work for, and why do they work among young people across different settings?” The databank approach, if feasible, would enable studying the effects of contextual determinants, experiences, behaviors, and interventions in a real-world setting, for both researchers and participants.
The study provides an extraordinary opportunity to engage culturally and contextually diverse groups of young people and researchers on critical questions for youth mental health. This is fundamental to strengthening the science of global mental health and ensuring that the solutions are informed by specific needs.
Where have we reached?
So far, at the India site, we have recruited a youth panel that comprises of young people (18-24 years) with lived experience from diverse backgrounds and geographical locations to co-design the study. The professional youth advisor facilitates discussions with the youth panel to draw their inputs to inform the design and implementation of the study.
After finalising the study protocols and receiving the ethical approval for conducting the study, we began recruiting participants for the quantitative arm of the study, in November 2021. We enrolled 1034 participants into the study from all over India.
For the qualitative arm of the study, we have conducted focus group discussions with 45 young people from across India, to gather their in-depth insights about how they would want a global mental health databank to be designed, and their hopes, concerns and preferences related to data sharing and privacy.
We aim to analyse and disseminate all our study findings by August 2022.