MindKind study seeks to advance research on interventions and treatment for anxiety and depression in young people around the world.
SEATTLE [Sept 6, 2022]: Sage Bionetworks and Wellcome Trust released the findings from a two-year pilot project testing different approaches to building a sustainable, inclusive, responsible, and fair databank that can collect and share diverse mental health data. The MindKind study was commissioned by Wellcome Trust and led by Sage in partnership with a consortium of researchers, technologists, and young people with lived experience of mental health challenges in India, South Africa, and the UK. The study explored the technical, ethical, and regulatory challenges to building a databank for global mental health data.
“Wellcome want to further understanding or how best to develop longitudinal datasets to illuminate how brain, body and environment interact in the trajectory and resolution of anxiety, depression, and psychosis,” stated Miranda Wolpert, Wellcome’s Director of Mental Health. “We wanted to explore how to collect and share data in a sustainable, inclusive, and responsible way. We were particularly interested in how to balance rights and privacy of participants with the wish to support open data for diverse researchers.”
According to Megan Doerr, MindKind principal investigator and Director, Applied Ethical, Legal, and Social Implication (ELSI) Research at Sage Bionetworks, “Historically, mental health studies have rarely engaged youth participants directly as decision makers. Sage is committed to partnership with the contributors of personal health data, which we see as essential to the ethical collection and sharing of data to accelerate health solving. Our participatory research approach for this project was grounded in regarding young people as equal partners in all phases of the research, alongside future users of these data.”
The team included academics, researchers, and data scientists, as well as engagement specialists working alongside youth with lived experience of anxiety and depression. Youth were embedded in the study as colleagues and equals, from strategic decision-making to leading grassroots engagement and co-authoring academic papers. Professional youth advisors from all three countries were hired to lead lived experience involvement, including planning and delivering youth engagement.
MindKind Professional Youth Advisor Refiloe Isipho Sibisi from South Africa states, “Being included and seen as equal partners in this study has been critical in building trust between researchers and youth participants serving as citizen scientists. Ultimately, that trust should be a prioritized factor in successful data gathering more than any specific model of data collection or governance.”
Governance models for data collection, management, and sharing were tested during MindKind by using a prototype app that collected personal health information related to sleep, bodily movement, engagement in and with positive activities, and social connectivity using surveys and non-traditional data sources, such as passive phone measurements about habits like screen time.
The study generated a rich and nuanced set of insights and evidence about how young people feel about and prioritize different approaches to the collection and use of data about their lives and mental health. The participating youth demonstrated a sophisticated understanding of the costs and benefits of sharing mental health data with researchers, balancing personal privacy concerns with the benefits of an open science approach that could help their peers.
About Sage Bionetworks
Sage Bionetworks (sagebionetworks.org) is a non-profit health research organization based in Seattle, Washington. Sage uses open practices that increase the reliability of scientific claims to speed the translation of science to medicine. Through its work, Sage supports responsible data sharing, objective evaluation of methods and results across researchers, and the empowerment of participants to be active partners in research.
About Wellcome Trust
Wellcome (wellcome.org) is an independent charitable foundation which supports science to solve the urgent health challenges facing everyone. We support discovery research into life, health and wellbeing, and we’re taking on three worldwide health challenges: mental health, infectious disease and climate and health.
Susan Ward, Team Soapbox