DATAMIND: Data Hub for Mental health INformatics research Development

Lead Research Organisation: Swansea University
Department Name: Institute of Life Science Medical School

Abstract

DATAMIND: Data Hub for Mental health INformatics research Development


What is the problem?

Poor mental health affects everyone at some point in their lives to varying degrees. It is the biggest cause of ill-health and the links, both ways, between physical and mental ill-health are often overlooked. People with mental illness are less likely to take part in or remain in usual types of research studies, be they 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 to look at how to prevent mental ill-health and maintain and improve people's mental health. Real-world data, often but not always collected routinely as people go about their everyday lives, offers powerful solutions to overcome these issues. We should use them but at the moment, they are hard to find, applying to use them is tedious, and using them can be hard work. Also, people working on physical health, like heart disease, and mental health tend to work apart, without looking at the links or sharing their work.


What will we do about it?

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 are going to work with people, patients and people with personal experience of mental health to understand who they are happy with and trust to use their data, and develop ways people can work together on mental health. We are also going to work with researchers, policy makers, charities and people in industry to understand what sort of data they think can answer the questions they want to ask.We plan to find, list and share where people do not usually look for mental health data- like in trials about heart disease.

We will make it easier for everyone invested in mental health to use data in safe, secure and sometimes new ways. Our Hub is led from across the four nations of the UK so that mental health data will relate to everyone. The Hub will allow future work to happen using data from places outside of usual health care e.g. in new places like schools or from charities.
It will ensure everyone's voice is heard- even those who do not usually take part in research.
We also plan to work closely with others doing the same sort of work as us but in different areas like diabetes so we can understand the links and share learning.


How will this benefit people?

By making it easier to know where the data need may be and how to use it the Hub will support excellent research in cutting-edge ways 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 and will continue to do so - this is why there are patient and public members who have worked with us on developing this. We have assembled a group of researchers across a number of universities who have lots of experience in doing this sort of work with the view of preventing and improving mental health for all.

Technical Summary

Despite the significant health, social and economic burden caused by mental health disorders, research to address them is currently constrained by a number of issues. People who have mental health disorders are socially excluded, less likely to participate in research studies and, if they do, remain in follow-up. Consequently, those with these disorders are inadequately served by consented research studies which under-represent those at greatest need. Moreover, in spite of the huge potential of data-centric health research and the UK's internationally leading status in terms of mental data resources (such as longitudinal and cohort studies, and data platforms), such resources are not yet well coordinated, and mental data research is not well integrated with physical health specialities (despite well-recognised interactions).

Our new Mental Health Data Research Hub will maximise the value of the UK's rich mental health data assets and enable coordinated research, with the ultimate aim of improving lives. The Hub will transform MH research in the UK by providing a central, integrated data infrastructure - with Findable, Accessible, Interoperable, and Reusable - FAIR mental health rich datasets from diverse sources; underpinned by expertise, innovation, responsible-use principles and embedded public participation; for use across Academia, the NHS, Third Sector, Policy Makers and Industry. The Hub infrastructure will be co-located at 4 lead sites in UK covering the four nations. A core activity is indexing and curating data for research, development and innovation across stakeholders. The Hub will continuously, from its onset, catalogue relevant UK mental health rich datasets, including genomics, routine care, cohorts and trials, often through the Catalogue of Mental Health Measures as well as novel data from schools and charities and make them discoverable and therefore useable through the
HDRUK Gateway.

Publications

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