DATAMIND: The Data Hub for Mental Health Informatics Research and Development
Lead Research Organisation:
Swansea University
Department Name: Institute of Life Science Medical School
Abstract
What is the problem?
Poor mental health affects everyone at some point in their lives. It is the biggest cause of ill-health and the links, both ways, between physical and mental ill-health are often underplayed but increasingly important. People with poor mental health 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. The UK has some of the best data in the world to look at how to prevent mental ill-health and work out the best ways to treat it. But we're still not making the most of them- they can be tedious to find and using them can be hard work. People working on physical health, like heart disease, and mental health tend to work apart, and overlook each other which means we don't share learning or really understand how things work in people.
What will we do about it?
In 2021 we set up DATAMIND to improve people's mental health by changing the way the NHS, charities, industry, and researchers use and share information and data that's already out there. It's a data hub, where researchers and others can find what data is out there and what it covers (e.g., how many people have depression in similar studies and was it measured in the same way). We want existing mental health data to be used to benefit patients and the public and improve care. We work alongside people, patients and people with personal experience of mental health to understand who they trust to use their data and develop ways people can work together (check out our DATAMIND Glossary which helps people understand and talk to each other about mental health data science). We work with researchers, patients and the public, policy makers, charities, and industry to understand what sort of data they think can answer the questions they want to ask.
Our Hub is led from across the four nations of the UK so that mental health data will relate to everyone. We use data from where people are, not just healthcare, but also schools and now mobile phones (with consent). It ensures 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 cancer so we can understand the links and share learning.
How will this benefit patients?
By making it easier to know where the data is, matching it to people's needs and streamlining how to use it the Hub supports world class research in cutting-edge ways that will improve the lives of people living with poor mental health in the UK. We have worked alongside patients and the public from the start and will continue to do so - we are one DATAMIND team. We have assembled a network of researchers, across several universities and partners, including HDRUK, who have lots of experience in doing this sort of work with the aim of preventing and improving mental health for all.
Poor mental health affects everyone at some point in their lives. It is the biggest cause of ill-health and the links, both ways, between physical and mental ill-health are often underplayed but increasingly important. People with poor mental health 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. The UK has some of the best data in the world to look at how to prevent mental ill-health and work out the best ways to treat it. But we're still not making the most of them- they can be tedious to find and using them can be hard work. People working on physical health, like heart disease, and mental health tend to work apart, and overlook each other which means we don't share learning or really understand how things work in people.
What will we do about it?
In 2021 we set up DATAMIND to improve people's mental health by changing the way the NHS, charities, industry, and researchers use and share information and data that's already out there. It's a data hub, where researchers and others can find what data is out there and what it covers (e.g., how many people have depression in similar studies and was it measured in the same way). We want existing mental health data to be used to benefit patients and the public and improve care. We work alongside people, patients and people with personal experience of mental health to understand who they trust to use their data and develop ways people can work together (check out our DATAMIND Glossary which helps people understand and talk to each other about mental health data science). We work with researchers, patients and the public, policy makers, charities, and industry to understand what sort of data they think can answer the questions they want to ask.
Our Hub is led from across the four nations of the UK so that mental health data will relate to everyone. We use data from where people are, not just healthcare, but also schools and now mobile phones (with consent). It ensures 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 cancer so we can understand the links and share learning.
How will this benefit patients?
By making it easier to know where the data is, matching it to people's needs and streamlining how to use it the Hub supports world class research in cutting-edge ways that will improve the lives of people living with poor mental health in the UK. We have worked alongside patients and the public from the start and will continue to do so - we are one DATAMIND team. We have assembled a network of researchers, across several universities and partners, including HDRUK, who have lots of experience in doing this sort of work with the aim of preventing and improving mental health for all.
Technical Summary
DATAMIND maximises the value of UK's rich MH data assets and enables co-ordinated research through our network, infrastructure and services. In its next five years, DATAMIND will continue to work towards it's long term vision to transform MH research in the UK by providing a central, integrated data infrastructure- with Findable, Accessible, Interoperable, and Reusable (FAIR) MH rich datasets from diverse sources; underpinned by expertise, innovation, transparency, responsible-use principles and embedded public participation; for use across academia, the NHS, the third Sector, policy makers and industry- to improve the lives of those with mental health conditions.
We will develop infrastructure including a Mental Health Trusted Research Environment, datasets, and tools to enable more efficient MH research, working across all four UK nations. We will underpin a new era of scientific discovery, interfacing and partnering with existing initiatives such as Health Data Research UK, the Office of Life Science Mental Health Mission (MHM) and the MRC Severe Mental Illness (SMI) Research Hubs, through development, enhancement and application of diverse data assets including Electronic Health Records (EHRs), Natural Language Processing, imaging records, multi-omics, environmental, and social data, and citizen-generated remote monitoring data.
Building on our achievements to date in realising a step change in the visibility and accessibility of NHS, administrative and longitudinal data through greater discoverability, annotation, harmonisation, and advanced analytics, and by ensuring the inclusion of diverse groups of under-represented individuals with the greatest clinical need, we will shift towards realising an integration of these resources with biological and wearables data. This data Hub and the expertise represented in the multi-site collaboration promotes interdisciplinarity, robustness and excellence in MH research and ensures ground-breaking innovation in partnership with people with lived experience, patients, the public, academia, the third Sector and industry. Together, we facilitate responsible and well-governed research practice for public benefit.
We will develop infrastructure including a Mental Health Trusted Research Environment, datasets, and tools to enable more efficient MH research, working across all four UK nations. We will underpin a new era of scientific discovery, interfacing and partnering with existing initiatives such as Health Data Research UK, the Office of Life Science Mental Health Mission (MHM) and the MRC Severe Mental Illness (SMI) Research Hubs, through development, enhancement and application of diverse data assets including Electronic Health Records (EHRs), Natural Language Processing, imaging records, multi-omics, environmental, and social data, and citizen-generated remote monitoring data.
Building on our achievements to date in realising a step change in the visibility and accessibility of NHS, administrative and longitudinal data through greater discoverability, annotation, harmonisation, and advanced analytics, and by ensuring the inclusion of diverse groups of under-represented individuals with the greatest clinical need, we will shift towards realising an integration of these resources with biological and wearables data. This data Hub and the expertise represented in the multi-site collaboration promotes interdisciplinarity, robustness and excellence in MH research and ensures ground-breaking innovation in partnership with people with lived experience, patients, the public, academia, the third Sector and industry. Together, we facilitate responsible and well-governed research practice for public benefit.
