Sage Bionetworks leads international feasibility study to identify core design components to build the Global Mental Health Databank with youth participants
SEATTLE, Nov. 18, 2020 – 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. The Global Mental Health Databank, a feasibility study officially launching today, hopes to change that by enabling 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.
Sage Bionetworks is leading an international group of researchers from Oxford University, University of Cambridge, University of Washington, Walter Sisulu University, Higher Health, and the Centre for Mental Health Law & Policy at the Indian Law Society in this effort to shift how a mental health databank could be developed and structured. This project is funded by the mental health area team at the Wellcome Trust as key infrastructure necessary 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.
This project will work directly with youth and researchers to build the blueprint for a global mental health program that directly collects data and provides insights to youth around the world. We will test how youth wish to interact with and use this system to advance understanding of mental health.
“We are excited to create a system that supports both youth and researchers in understanding mental health management strategies,” said Dr. Lara Mangravite, president of Sage Bionetworks. “We think it’s essential to start by developing a system that empowers young people to directly guide how their data is collected, shared and used.”
Partnering with Youth
Relying on mobile phones and other connected technologies, the study will collect data from youth participants about their lived experience with mental health self-management. Collecting such data, which requires a strong partnership between youth and researchers, will provide insight about how a person’s daily activities and surroundings affect their health and the success of their health-management strategies. For example, can changes in sleep habits, social interactions or financial security help mitigate anxiety?
“We look forward to rich learning as to how to balance the best ways to ensure those banking their data have maximal control and privacy, with the wish to allow diverse scientists to have ready access to data to advance understanding of the active ingredients that help address youth anxiety and depression globally,” said Professor Miranda Wolpert, MBE Head of the Mental Health Priority Area at Wellcome.
Leveraging existing technologies and expertise, Sage will also be testing the ability to operate a program of this nature at scale with the varied data privacy regulations of participating countries.
“India has the world’s largest population of adolescents and young people. Therefore, it is important that India is a part of such global initiatives to solve global problems affecting all of humanity, especially young people in low- and middle-income countries,” said Dr. Soumitra Pathare, Director, Centre for Mental Health Law & Policy, ILS, Pune, India. “We hope that Indian researchers will also find this project of value in helping them solve these mental health problems in the India context.”
“This work 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,” said Dr. Pamela Collins, professor of psychiatry and behavioral sciences, professor of global health, and director of the UW Global Mental Health Program.
The team from the University of Washington will bring their deep experience in working with people coping with mental health challenges and how connected technologies can help assess mental health.
“Nearly every young person in the world has access to connected technologies and these technologies provide a window into their social, physical and emotional lives,” said Dr. Patricia Areán, professor of psychiatry and behavioral sciences at the University of Washington School of Medicine. “By banking this data, we hope to provide the opportunity to discover which strategies do and do not help them manage their mental health.”
The project envisions the databank as a platform that connects participants and researchers interested in studying the effects of contextual determinants, experiences, behaviors, and interventions in a real-world setting. To be successful, this platform must be technically feasible, beneficial to both data contributors and researchers, and it must operate under parameters that promote data justice.
“Data analysis should be the bedrock on which policy and practice rest, and it is therefore essential that we as researchers engage in dialogue with young people about how their data could support population mental health and ensure that their concerns about privacy and confidentiality are enshrined in governance procedures,” said Dr. Tamsin Ford, Professor of Child and Adolescent Psychiatry at the University of Cambridge and Honorary Consultant at Cambridge and Peterborough NHS Foundation Trust.
“While this is still at early stages, we hope that this work will ultimately help to practically change lives globally,” said Dr. Melvyn Freeman, of Higher Health. “I am personally hopeful, and quietly confident, that this databank will become the cog around which research into depression and anxiety in young people will turn in the future, and hence make a big difference to youth well-being.”
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Sage Bionetworks: Sage Bionetworks is a nonprofit biomedical research and technology development organization that was founded in Seattle in 2009. Our focus is to develop and apply open practices to data-driven research for the advancement of human health. Our interdisciplinary team of scientists and engineers work together to provide researchers access to technology tools and scientific approaches to share data, benchmark methods, and explore collective insights, all backed by Sage’s gold-standard governance protocols and commitment to user-centered design. Sage is a 501c3 and is supported through a portfolio of competitive research grants, commercial partnerships, and philanthropic contributions.
Centre for Mental Health Law & Policy, ILS, Pune, India: The Centre for Mental Health Law & Policy aims to protect and promote the rights of persons with psychosocial disabilities using a rights-based approach to mental health through law and policy reform; implementation research; community capacity building; strategic litigation & strengthening public mental health systems, peer support; youth mental health and training & education. CMHLP works with different stakeholders including service users, mental health professionals, policymakers, civil society organisations and researchers both nationally and internationally with a specific focus on vulnerable and marginalised populations in low- and middle-income countries (LMICs).
About the University of Cambridge: The mission of the University of Cambridge is to contribute to society through the pursuit of education, learning and research at the highest international levels of excellence. To date, 110 affiliates of the University have won the Nobel Prize. Founded in 1209, the University comprises 31 autonomous Colleges and 150 departments, faculties and institutions. Cambridge is a global university. Its 19,000 student body includes 3,700 international students from 120 countries. Cambridge researchers collaborate with colleagues worldwide, and the University has established larger-scale partnerships in Asia, Africa and America. The University sits at the heart of the ‘Cambridge cluster’, which employs more than 61,000 people and has in excess of £15 billion in turnover generated annually by the 5,000 knowledge-intensive firms in and around the city. The city publishes 316 patents per 100,000 residents. www.cam.ac.uk
UW Medicine in Seattle: UW Medicine is one of the top-rated academic medical systems in the world. With a mission to improve the health of the public, UW Medicine educates the next generation of physicians and scientists, leads one of the world’s largest and most comprehensive biomedical research programs, and provides outstanding care to patients from across the globe. The UW School of Medicine is second in the nation in federal research grants and contracts with $930.4 million in total revenue (fiscal year 2019) according to the Association of American Medical Colleges.
Oxford University: Oxford University has been placed number 1 in the Times Higher Education World University Rankings for the third year running, and at the heart of this success is our ground-breaking research and innovation. Oxford is world-famous for research excellence and home to some of the most talented people from across the globe. Our work helps the lives of millions, solving real-world problems through a huge network of partnerships and collaborations. The breadth and interdisciplinary nature of our research sparks imaginative and inventive insights and solutions. Through its research commercialisation arm, Oxford University Innovation, Oxford is the highest university patent filer in the UK and is ranked first in the UK for university spinouts, having created more than 170 new companies since 1988. Over a third of these companies have been created in the past three years.
HIGHER HEALTH: HIGHER HEALTH is an implementing agency of the Department of Higher Education and Training (DHET). HIGHER HEALTH is dedicated to promoting the health and wellbeing of nearly two million students in the post-school education system. Our structures, implementing programmes, campaigns and a wide spectrum of health, wellness and psychosocial services cover over 420 campus sites, and rural, informal and urban settings. Most of the students we work with are in the 15-24 year age group and most come from impoverished backgrounds.
Walter Sisulu University: Walter Sisulu University (WSU) is a university of technology and science in Mthatha, Eastern Cape, South Africa. This institution was founded in 2005 and offers quality education to over 24,000 students across its four campuses.