We want to understand how best to design a mental health databank which identifies active ingredients in preventing and treating depression and anxiety in young people. We have brought on board young people's voices on how to measure such active ingredients, and how such a databank might be designed, used, and shared. Along with colleagues in Cambridge, we work closely with young people, professionals, and researchers in South Africa and India. We welcome other collaborations and enquiries.
What exactly is a databank?
A databank is a collection of information about people, places, and things that is managed in a central location so that interested people can search it to learn from the information. People can also contribute information to a databank. For example, if you have data that you want to contribute (like information about your local environment, your activities, your community, and/or your mental health) a databank also allows you to submit this information so that it can be safely shared with others without giving them personal details that would identify you. A databank could also allow young people who contribute data to look at their own personal information and learn about themselves.
WHAT IS THE MINDKIND STUDY?
Research partners from India, South Africa, the United Kingdom, and the United States have come together to codesign, build and test with young people, a mental health databank that will hold information about mental and physical health among young people from 16-24 years old. This Global Mental Health Databank (GMHD) project is funded by the Wellcome Trust, based in the United Kingdom. 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. We hope that the databank can help researchers, scientists, and young people 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?”
This programme has already identified a list of active ingredients (things contributing to making the difference to improve on-going mental health difficulties) for different approaches to preventing and treating mental health problems among young people. These active ingredients can make a big difference in depression and anxiety prevention, care, and treatment. For example, active ingredients in depression and anxiety treatment or prevention interventions could include things like tips for better sleep management, best ways to improve social relationships with friends or family, or reducing feelings of loneliness. Our GMHD project will collect data on some of these active ingredients among young people. Gathering input from young people on how to best measure these ingredients among youth is one of our priorities.
Who is involved?
India, South Africa, and the United Kingdom are the initial places where we will design and test whether the GMHD is easy to use and useful to researchers and young people. To do this, our team will ask young people across these three countries to share some of their data. At this early stage of the project we are very interested in understanding if young people can and will share their data. We want to involve young people in the design of the Databank so that we create a Databank that is acceptable to them, easy to use, and useful. These organisations are members of the project team: Oxford University, Cambridge University, Centre for Mental Health Law and Policy, Indian Law Society, Pune, Walter Sisulu University, Higher Health South Africa, University of Washington, and Sage Bionetworks.
Over the next year, team members from these institutions will work closely with young people to lead a collaborative and creative process of developing and pilot testing the GMHD.
One way to involve young people will be to have youth advisors from India, South Africa, and the United Kingdom that will help guide the development of the databank and co-create the databank with us. We hope that the databank will be user-friendly for 1) young people who contribute their data and 2) researchers seeking to use the data to answer important questions to benefit young people’s mental health. We will look for young people to provide feedback and advice at different stages of the project. Each country will develop Youth Panels to give feedback and guide aspects of the design most relevant to youth needs. An international youth panel (IYP) will include representatives from each country. They will make sure each Youth Panel’s ideas and opinions are shared with the project teams or the GMHD Steering Committee.
The in-country Youth Panel will be responsible for:
- Co-designing the key questions of our project and reviewing the active ingredients we want to use to see if it is realistic for the databank to collect information about these ingredients.
- Co-designing the mobile platform we use to collect mental health-related data from youth (e.g., smart phone apps, WhatsApp, SMS)
- Providing advice and perspectives on how best to collect data among young people in India, South Africa, and the United Kingdom
- Helping to recruit youth participants and share our findings to the community
- Helping to plan future research directions
- Providing feedback to the GMHD Steering Committee, through the International Youth Panel, on the above issues and other topics relevant to project design, data collection among young people in our research settings, and ethical issues and privacy concerns.