September 30, 2019
By Amanda Marchant, Sristi Rai, Ann John
We asked Amanda Marchant, Sristi Rai and Ann John, from the Population Psychiatry, Suicide and Informatics (PPSI) research group within the Swansea University Medical School, to describe a new health data platform that will address a large gap in youth mental health research. The Adolescent Mental Health Data Platform (ADP) aims to improve how researchers and policy makers access youth mental health data to better understand mental ill-health and inform policies regarding treatment and access to services. It is a key component of MQ’s research program Brighter Futures and will be undertaken in collaboration with Swansea University.
One in 10 young people aged 5–24 years old is affected by mental ill-health, such as anxiety, depression, psychosis and eating disorders. These mental health problems may be linked to what is happening in their lives: families struggling to pay the bills, loneliness or lack of emotional support, bullying, etc.
Seventy-five percent of mental health disorders are established by age 24, yet 70% of young people have not had access to appropriate interventions at a sufficiently early age. Almost 110,000 young people are turned away from mental health services each year, and the latest figures from the United Kingdom show that there has been a 50% increase in the number of young people with mental health disorders accessing social services in four years. There is an urgency to address the needs of young people. More resources are needed to provide the right services and enhanced support for young people, but this needs to be combined with concerted efforts to prevent them from reaching crisis point.
Further research is needed to inform real change to policy, practice and services. By learning more about the support young people need, we can develop resources targeted to achieve maximum impact.
Transforming our capacity for research into young people’s mental health
Data collection, particularly as it relates to accessing health services and social care, has the potential to provide crucial insight into the mental health of young people. These insights can help to tackle some of the major challenges young people face today. However, bringing this data together to get meaningful information has often been time-consuming and difficult for researchers and policy makers.
The Adolescent Mental Health Data Platform (ADP) aims to transform youth mental health research capacity by anonymously/ privacy protecting bringing data from health services, schools and social care together into one place where it can be easily used by researchers and policy makers. Billions of pieces of data, including administrative, health, social, education, psychological and clinical data and information from individual research studies, will be included in the platform. This will be an unparalleled resource, bringing together scientists in youth mental health from across the world and making it easier and faster for them to deliver progress in under-treatment and under-recognition. Furthermore, data from this platform can help inform policies that can improve access and quality in young people’s services.
The ADP will make it possible to gain insight into a multitude of factors impacting mental health by also bringing together the voices of young people through our Be Heard page, which has been developed by young people for young people. We think it’s important to understand the perspectives of young people experiencing mental ill-health, and we are currently working with young people on several different projects. We are producing a series of films and animations on topics such as data anonymisation and mental health. We are also conducting focus groups and an online survey to gather the views of young people on bystander intervention in relation to cyberbullying. We also work with the MQ Young People’s Advisory Group, which is made up of a range of young people who have had personal experience of mental ill-health or have supported family members or close friends who have been affected by a mental health condition.
All this data can be used to identify groups of young people who may be at risk of developing mental health disorders. Identifying these risk factors means that tailored support can be made available to young people before mental health conditions are established, helping to diminish long-term problems. Our research also aims to learn more about how young people use health services, and how mental health affects school attainment, internet use and physical health, to identify areas for tailored intervention and to inform targeted use of resources.
The ADP represents a ‘step-change’ in young people’s mental health research. By using this data platform to further understand young people’s mental health, we can inform policy and practice, and intervene early.
Do you have a youth mental health-related question that research may have an answer to? ADP can link your data with datasets available in the platform safely and securely, providing further opportunities for research to discover new insights into youth mental health.