Building a sustainable and fair global mental health databank
We want to build a sustainable, inclusive, responsible and fair databank to collect rich data about which approaches could help people better manage their mental health.
Our goal is to do that in a way that works globally, enables cross-discipline collaboration and empowers those sharing their data, as well as researchers.
What we’re doing and how
This project is part of the mental health team’s aim to find out what helps prevent or address anxiety and depression in young people worldwide by supporting researchers to answer the question ‘what interventions work for whom and why?’.
To do this, we need to enable the collection, storage and use of data about biological and behavioural aspects of a person’s life. It is vital we do this in a way that is ethical, sustainable and fair, and there are many challenges we need to understand and address along the way.
1. What the evidence tells us
Mental health research has often focused on limited data sets. Most studies have looked at the small population who access treatment, and who come from contexts that are Western, educated, industrialised, rich and developed (Henrich et al., 2010).
The scope of the research has also been limited. More than 100 potential interventions that do not involve professional input have been described as ways young people might address anxiety and depression, such as exercise, listening to music or engaging with nature. Yet virtually none of these have been scientifically researched (Wolpert et al., 2018).
And, in part due to technology limitations, researchers have not collected sufficiently granular information on things that may be relevant, such as life events and social and economic context (Pickett and Wilkinson, 2010, Bringmann et al., 2013).
2. Our approach
We have commissioned a two-year feasibility study – MindKind – to test ways to build a sustainable, inclusive, responsible and fair mental health databank.
For this pilot phase, data related to sleep, bodily movement, positive activities and social connectivity is being collected. Surveys and non-traditional data sources such as location and social media use are also being used.
There are many technical, ethical and legal complexities in developing such a resource. To address these, the project team is:
- co-designing the research with young people with lived experience – to make sure their perspectives and needs are embedded from the ground up, and they’re not just consulted as advisors.
- working in multiple global regions – to understand the technical, regulatory and ethical points across different cultures and contexts, to ensure data can be collected globally. We’re starting with India, South Africa and the United Kingdom.
- building evidence for novel data governance systems – to give power and control to the people who are sharing their data. We’re doing this through deliberative democracy exercises and by testing different models.
At the end of the feasibility study, the team aims to have a minimal viable product. This will be supported by a wealth of evidence to help us evaluate if it is feasible to create a community-led databank that enables an open science community, and new computational approaches to research.
Take part in the MindKind study
We’re inviting young people in the UK to take part in the study. We'll be opening up the invitation to people in South Africa and India soon after.
We want to learn from you:
- what information are you willing to share with researchers about your emotional health?
- how much control do you want over how your information is collected, managed or used by researchers?
3. Our values
Empowering those who have been globally underrepresented in young people’s mental health science is central to our work.
This means including early-career researchers, young people and those from diverse places, drawing on the widest and most rigorous evidence base possible, and working with others to support advocacy and sustainability.
Our programme is built on four pillars of practice:
- empowerment: we will make sure that the diverse views of young people with lived experience of depression or anxiety are considered in all aspects of our programme.
- evidence: we will bring the fragmented field of mental health science together, by collecting evidence about a range of approaches that might work for anxiety and depression, from biological to behavioural and societal approaches.
- advocacy: we will develop advocacy for policy makers and others to ensure the relevance and importance of research is recognised and acted upon.
- sustainability: we will provide leadership, focus and coordination for funding research efforts across government and philanthropic sectors.
Who we're working with
We commissioned Sage Bionetworks and their partners from Walter Sisulu University, the Indian Law Society, the University of Cambridge, the University of Oxford, and the University of Washington to work on this pilot. They bring expertise across clinical psychology, psychiatry, mental health law and policy, behavioural sciences and epidemiology.
The teams are working closely with a panel of young people with lived experience in each of the three countries – India, South Africa and the United Kingdom. Alongside researchers, they help shape how the prototyping study is designed, how and what data is collected, and how data is ultimately used.
What we've learned so far
Meet the team
- Professor Miranda Wolpert, Director of Mental Health, Wellcome
- Miranda Marcus, Product Lead, Wellcome
- Katie Taylor, Databank Lead and Head of Experience Design, Wellcome
- Yo Yehudi, Open Source Technology Lead, Data for Science and Health, Wellcome
- Dr Kate Martin, Lived Experience and Public Engagement Lead, Wellcome
- Shuranjeet Takhar, Lived Experience Consultant, Wellcome