Hello! I’m Elena Triantafillopoulou, an early career researcher at King’s College London and the project manager for the core activity of Findable, Accessible, Interoperable and Reusable (FAIR) curated mental health data at DATAMIND. Through my work, I aim to help improve the discoverability of mental health data available in the UK in order to increase their uptake for research. Specifically, I work on data discoverability platforms that contain information about mental health data and how these data can be accessed by researchers.
DATAMIND collaborates with several discoverability platforms in the UK, including the Health Data Research (HDR) UK Innovation Gateway, the Catalogue of Mental Health Measures and the UK Longitudinal Linkage Collaboration (UK LLC). These platforms include information about the wealth of data collected as part of UK-based cohort and clinical studies, and DATAMIND supports the inclusion and coordinated representation of mental health data across them.
My work with DATAMIND has involved facilitating the onboarding of information onto these discoverability platforms. In doing so, I have observed how DATAMIND has supported the selection of information included on them as well as the effort (and success!) to increase the interoperability between them.
DATAMIND beyond mental health data
The discoverability platforms that collaborate with DATAMIND include information about UK-based cohort and clinical studies, their populations and data accessibility. They also feature information about the data collected. As mental health is often researched in relation to other individual characteristics, it is useful for researchers using these platforms to also know about other data available in these studies.
With this in mind, DATAMIND has supported the inclusion of information about physical health variables collected in the cohort studies featured on the Catalogue. In addition, DATAMIND has also supported the review of information about genetic and genomic variables available in the cohort and clinical studies on both the Catalogue and the Gateway. These enhancements to the metadata currently featured on these platforms can ultimately better support a wider range of research questions.
The coordination of data discoverability platforms
Through DATAMIND’s core activity in FAIR curated mental health data, we have enabled the three platforms mentioned to share metadata with each other in two effective ways.
Firstly, the Catalogue shared metadata about cohort studies based in the UK with the HDR UK Innovation Gateway. This expanded the Gateway’s information and aligned it with existing information on the Catalogue.
Secondly, the Catalogue implemented an API on its website, enabling other platforms to extract metadata and seamlessly add it to the new UK LLC searchable platform, UK LLC Explore.
Collaboration highlights
In addition to providing a coordinated approach to data discoverability, DATAMIND also brings together mental health researchers and the Lived Experience Advisory Group (LEAG). These two groups have collaborated and advised on various aspects of FAIR curated mental health data projects, and this has elevated the quality of their outputs.
For example, in the review of genetic and genomic variables, a workshop with both academic researchers and members of the LEAG informed us which variables should be featured in the discoverability platforms and how they should be represented.
Taken together…
During my time working with DATAMIND, the infrastructure and collaboration provided have transformed the quality of the projects we have been working on. The initiatives and the support provided have already produced valuable outputs. Moving forward, the focus will be to continue to implement these on discoverability platforms while maintaining and increasing their interoperability.
For more information, please visit www.datamind.org.uk or email datamind@swansea.ac.uk.
