• Mental ill health affects most people at some point in their lives and is a leading cause of illness for people in the UK. 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.

    Despite this, 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.

  • Funded by the Medical Research Council (MRC) and collaborating with Health Data Research (HDR) UK and MQ: Transforming Mental Health, DATAMIND operates as a central hub for Mental Health Informatics Research. Led by Professors Ann John and Rob Stewart, DATAMIND collaborates extensively with partners across the UK, collecting anonymous mental health data from diverse sources to enhance understanding, help shape and inform policy decisions, and ultimately improve the lives of people living with poor mental health.

    Empowering researchers and engaging with academics, the public, policymakers, the private sector, and charities, DATAMIND transforms how information is utilised. By connecting researchers with crucial data and involving those with personal mental health experiences, DATAMIND explores unconventional data sources and fosters innovative, secure data use. This inclusive approach spans all four nations of the UK, ensuring diverse perspectives are considered and collaboration is encouraged. DATAMIND continuously organises UK data, focusing on mental health information, including 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. Researchers can access and use datasets through the HDR UK Innovation Gateway. The overall aim is to transform how mental health data in the UK is accessed, found and used.

  • DATAMIND is transforming 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 is achieved by organising UK data, with a specific focus on mental health information, including 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. Researchers can access and use datasets through the HDR UK Innovation Gateway.

    This work is guided by six main objectives:

    1. To embed patient, personal experience and public participation
    2. To be guided by and responsive to the needs of users
    3. To make data discoverable, accessible and available
    4. To curate and enhance the interoperability of data
    5. To develop global standards
    6. To support capacity development

    To achieve these objectives, DATAMIND has focused on four core activities:

    1. Public Participation, Partnership and Governance
    2. Findable, Accessible, Interoperable and Reusable (FAIR) Curated Mental Health Data
    3. Workforce Capacity, Training and Development
    4. Business Development and Sustainability

    Specifically building on the MRC Pathfinder community, the Hub has also been working on six identified Road Builder Innovations which are being delivered at different Milestones over the course of the project. These will potentially become Hub Core Activities over time working across and extending further into key objectives.

    The Road Builder Innovations are:

    • Discoverable Schools
    • Discoverable excluded and under-served groups
    • Linking Physical and mental health in SMI
    • Widening availability of mental health care text analytics capabilities
    • Digitally Enhanced Trials
    • Drug discoverability
  • Workshops and Training Focus:

    • Successful facilitated several workshops for early career researchers.
    • Identification of training needs followed by the provision of courses.

     Data Literacy Course:

    • A course developed in collaboration with the DATAMIND PPIE group and the McPin Foundation to help people understand how the NHS uses and stores healthcare data.

     Transforming Mental Health Research with Innovative Tools

    • Core mental health Data (CMHDS) collection tool: an open-source tool which enables the collection of mental health data from participants in physical health studies.
      • Equity audit tool that analyses and displays the representativeness of mental health clinical samples during study recruitment.
      • Mental Health Text Analytics Cloud (MH-TAC).
      • VELA: a tool for simplifying information extraction from large, linkable mental health data sources.
      • PHENOMIND: making phenotype library code lists and algorithms available for research data.

     DATAMIND Glossary:

    • A user-friendly resource created in collaboration with the DATAMIND PPIE team to simplify the complex language of mental health data science.
  • We work with universities, the NHS, health charities, public body policy makers, and industry groups. These include:

    1. SAIL Databank
    2. Adolescent Mental Health Data Platform (ADP)
    3. Swansea University
    4. King’s College London
    5. University of Edinburgh
    6. Queen’s University Belfast
    7. University of Cambridge
    8. University College London
    9. University of Bristol
    10. University of Manchester
    11. University of Glasgow
    12. Cardiff University
    13. Bangor University
    14. Health Data Research UK
    15. The Psychiatry Consortium
    16. McPin
    17. Kooth
    18. Accelerate
    19. Akrivia Health
    20. AIMES
    21. National Centre for Mental Health (NCMH)
    22. MQ: Transforming Mental Health
    23. Medical Research Council (MRC)
    24. Chief Scientific Officers and policy leads from all four UK nations
  • Patients and the public play a crucial role in DATAMIND, ensuring the project aligns with real-life experiences of those dealing with mental health challenges. By working closely with people who have faced such challenges, DATAMIND ensures that the use of data respects the preferences and concerns of the general public and patients. This collaboration brings diverse perspectives into the project, making sure it addresses the unique needs of individuals dealing with mental health difficulties. Through the Super Research Advisory Group (SRAG), which includes people from various backgrounds and experiences, DATAMIND promotes inclusive decision-making, ensuring that the insights of those directly affected by mental health issues guide the research.