The Catalogue is part of DATAMIND, an HDR UK data hub. The Catalogue was previously funded by CLOSER, and is supported by a grant to the ESRC Mental Health Leadership Fellow.

The Catalogue collaborates with DATAMIND and the DATAMIND Super Research Advisory group (SRAG).

DATAMIND, the Health Data Research UK Hub for Mental Health

DATAMIND, funded by the Medical Research Council (MRC) and collaborating with Health Data Research (HDR) UK and MQ: Transforming Mental Health, 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 and found and used.

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

The Catalogue of Mental Health Measures and collaborators, such as the HDR UK Innovation Gateway, are part of the Findable, Accessible, Interoperable and Reusable (FAIR) Curated Mental Health Data core activity. All share similar values about the importance of making mental health data discoverable and encouraging the uptake of data to overall improve our understanding of mental health.

For more information and to explore DATAMIND's initiatives, visit: datamind.org.uk.

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DATAMIND Super Research Advisory Group (SRAG)

From the outset, DATAMIND agreed to “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.”

As a result, the Super Research Advisory Group (SRAG) was developed by DATAMIND to engage with members of their communities and the general public. The SRAG comprises people with personal experiences of mental illness, whether personal or through caring for others.

Some projects that the SRAG have worked on include:

• Developing a user-friendly mental health DATAMIND glossary
• Creating a diagram for ‘Meaningful Involvement of Patients, Carers, and the Public in Research’
• Supporting the simplification of genetic tables for patients and the public
• Sharing discovered insights at the MQ Data Science Conference

The SRAG works closest with the projects of ‘Public Participation, Partnership and Governance’ but members of the SRAG are continuously contributing to other projects affiliated with DATAMIND as well.

For more information on the Super Research Advisory Group, and to see a full timeline of their work, visit: datamind.org.uk/patients-and-public/the-super-research-advisory-group.