Glossary

FAIR Mental Health Data

Overview/Challenge

Robust mental health data enable transformative mental health research, and the four nations of the UK are home to rich mental health data collected as part of cohort studies, genomic studies, routine care and clinical trials. The collection and maintenance of this data require both time and money invested by study teams, participants and institutions. Similarly, initiating new data collection is costly. To minimise these costs and maximise the uptake of already-collected data, a core activity of DATAMIND is to index, curate and increase the discoverability of existing data for research, development and innovation. Discoverability tools such as online catalogues that summarise existing data (metadata) can facilitate this effort across academia, the NHS, charities, policy makers and the industry.

Impact and outcomes

While there is no metric to measure the impact of these discovery tools quantitatively, there are qualitative accounts of users, colleagues and the public that have indicated their usefulness, including:

  1. Catalogue of Mental Health Measures:
    • Protocol development: We helped the paediatricians leading the MRC-funded PRENCOG Study (of preterm birth as a determinant of neurodevelopment and cognition in children; mechanisms and causal evidence) in finding measures of social context, using the Catalogue to see what other studies have used.
    • Project development: We have an increase of users on the Catalogue website during the months of undergraduate and postgraduate dissertations. An undergraduate student shared with us that he will be undertaking his dissertation on the links between depression, social isolation and inflammation (a physical health phenotype) and was able to identify which studies had both measures collected using the Catalogue.
    • Day-to-day support: Doctoral and post-doctoral students working closely with established data such as ALSPAC and TEDS have shared that the interactive timeline of the Catalogue has made it easier for them to summarise cross-wave data collection and information about these studies, for example for presentations or answering general questions.
  2. Affiliated projects:
    • HARMONY: The colleagues working on this platform secured the Wellcome data prize to fund its development, following the support of the Catalogue.
    • Social care catalogue: This catalogue is due to launch in the upcoming months. Our collaboration with the team leading it resulted in our inclusion of more detailed social care measures in the Catalogue, which provides additional information for each study, especially to users from the social sciences or interested in these variables.
  3. Landscaping International Longitudinal Data project:
    • As part of our Wellcome-funded project Landscaping International Longitudinal Datasets, we identified more than 3,000 longitudinal datasets worldwide. The public engaged with us on social media and via our website where we list all datasets. This resulted in 8,103 accounts engaging with our content throughout the dissemination of the project.
    • Researchers from all over the world engaged with us to tell us about their studies and to access the report where we summarise our strategy for identifying more than 3,000 longitudinal datasets worldwide, our selection of 19 pockets of value for classifying their richness, and our analysis for considering areas of potential enrichment in longitudinal data collection https://www.landscaping-longitudinal-research.com/what-we-found). We heard from researchers based in different regions (e.g., South America, Ireland, the Pacific) that they had not realised the volume of longitudinal data taking place in their part of the world.
    • We collaborated and heard from Lived Experience (LE) Experts from DATAMIND, Wellcome and MQ as part of a Theory of Change process that ran throughout the whole project. They told us about the importance of keeping LE at the heart of research and implementation which we highlighted in the report.
    • We disseminated a series of blogs including a blog by a Wellcome-based LE expert and one by a DATAMIND Super RAG representative.

What’s next?

A key message is that the metadata, resources and engagement of the Catalogue of Mental Health Measures, the affiliated projects and the Landscaping International Longitudinal Data project have supported:

  • Other platforms & cross-sector collaborations
  • Study protocol development & projects at any level (undergrad, doctoral students, doctors)
  • Engagement of the public and involvement of LEE

Next steps:

  • Catalogue of Mental Health Measures: We will incorporate tables of studies’ genomic data in the Catalogue through collaboration with colleagues in Cardiff. We will also continue to include impactful papers and charity websites as valuable resources for information and mental health support.
  • HARMONY: We will integrate the platform in the Catalogue to increase the usability of the Catalogue as it does not currently offer harmonisation.
  • Landscaping International Longitudinal Data project: We will publish the report of the project findings in an academic journal, which will increase the discoverability of data referenced. We are also in the process of discussing opportunities of how to develop the list of the longitudinal data on the website to facilitate their findability, accessibility, interoperability and reusability.
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