Poor mental health affects almost everyone at some point in their lives, to varying degrees. It is the biggest cause of ill health. The links between physical and mental ill health, which go both ways, are often overlooked. People with mental illness are less likely to take part in or remain in usual types of research studies about physical or mental health, or they are actively excluded. This means that much of what we know about mental illness is not based on the very people who are worst affected.
However, the UK has some of the best data in the world for looking at how to prevent mental illness and maintain or improve people’s mental health. Real-world data, often collected routinely as people go about their everyday lives, may be very helpful to overcome these problems. We should use it more, but at the moment these data sets are hard to find, applying to use them is tedious, and using them can be hard work. People working on physical health (like heart disease) and mental health also tend to work apart, without looking at the links or sharing their work.
DATAMIND works to make best use of our rich mental health data and enable coordinated research.
We want to improve people’s mental health by changing the way the NHS, charities, industry, and researchers use and share information that’s already out there. We will create a Hub where researchers and others can find and use mental health data, to benefit patients and the public and improve care. We work with patients and people with personal experience of mental illness to understand whom they trust to use their data, and to develop ways people can work together on mental health.
We work with researchers, policy makers, charities, and people in industry to understand what sort of data they think can answer their most important questions. We plan to find, list, and share places where people do not usually look for mental health data, such as in trials about heart disease.
Our work makes it easier for researchers committed to mental health to use data in safe, secure, and innovative new ways. Our Hub is led from across the four nations of the UK so that mental health data will relate to all sorts of people. The Hub will allow future research to happen using data from places outside usual health care settings—such as from schools or charities.
Our work ensures everyone’s voice is heard—even those who do not usually take part in research. We will work closely with others doing similar work across different specialisms, such as diabetes and heart disease, so we can understand the links and share experience.
Our new Mental Health Data Research Hub will make the most of the UK’s rich mental health data and enable coordinated research, with the ultimate aim of improving lives. The Hub will transform mental health research in the UK by providing a central, integrated data infrastructure with findable, accessible, interoperable, and reusable (FAIR) mental health data sets. This means data from diverse sources, underpinned by expertise and innovation, by principles of responsible use, and by public participation, for use across universities, the NHS, the charitable sector, policy makers, and industry.
In partnership with charity MQ: Transforming Mental Health, the hub will support the development of the public’s involvement in mental health research to ensure that valuable contributions are included from those with lived experience. The hub will also work alongside MQ to build capacity and strengthen expertise in this increasingly important area of research through the charity’s data science conferences and skills development workshops.
The Hub infrastructure will be located at four lead sites covering the four UK nations. We will index and curate data across participating organizations for research, development, and innovation. The Hub is continuously cataloguing relevant UK data rich in mental health information, including from gene studies, routine care, volunteer cohorts, and trials (often through the Catalogue of Mental Health Measures), as well as novel data from schools and charities. It will allow researchers to discover them, and therefore use them, through the HDR UK Innovation Gateway.
We work with universities, the NHS, health charities, public body policy makers, and industry groups. These include:
- SAIL Databank
- Adolescent Mental Health Data Platform (ADP)
- Swansea University
- King’s College London
- University of Edinburgh
- Queen’s University Belfast
- University of Cambridge
- University College London
- University of Bristol
- University of Manchester
- Cardiff University
- Bangor University
- Health Data Research UK
- The Psychiatry Consortium
- Akrivia Health
- National Centre for Mental Health (NCMH)
- MQ: Transforming Mental Health
- Medical Research Council (MRC)
- Chief Scientific Officers and policy leads from all four UK nations
Despite the significant health, social, and economic burden caused by mental disorders, research to address them is currently constrained by a number of problems. People who have mental health disorders are socially excluded and less likely to participate in research studies and, even if they do, are less likely to remain for follow-up. Therefore, those with mental disorders are inadequately served by participatory research studies, which under-represent those at greatest need. Moreover, in spite of the huge potential of “data-focused” health research, and the UK’s world-leading reputation for mental health data resources (such as longitudinal studies, cohort studies, and data platforms), such resources are not yet well coordinated. Mental health data research is not well integrated with physical health specialities, despite the well-recognised interrelationships between the mind and the body.
By making it easier to know where the data needed may be, and how to use it, the Hub supports cutting-edge research that will improve the lives of people living with poor mental health in the UK. We have involved patients and the public from the very start, as part of our team and beyond, and will continue to do so. We have assembled a group of researchers across several universities who have lots of experience in this type of work, with the aim of preventing mental illness and improving mental health for all.