Platform Overview
The Gateway hosts a collection of UK-based health datasets. The platform provides metadata that offers a broad overview of its datasets, information on their data utility and details on their technical features. Similarly, the Catalogue hosts detailed information about UK-based longitudinal studies’ samples and mental health measures.
Initiatives for Optimisation
Since the onset of DATAMIND, four main initiatives, outlined below, have focused on optimising these two platforms and their interoperability, and several “gems” have resulted as part of this work.
Expansion of Study Hostings
Firstly, both platforms have expanded the number of studies that they host. More specifically, the Gateway currently includes 12 additional UK-based longitudinal studies that were previously only on the Catalogue. The studies were onboarded by the Catalogue team, curating the information that is on the Catalogue to match the Gateway’s metadata specifications. As part of this onboarding, the Catalogue team also facilitated the contact of studies’ data custodians to inform them of this onboarding and the opportunity to take ownership of their page on the Gateway and enrich their details. To date, three data custodians responded to this opportunity and two have taken ownership of their study pages, enabling the more efficient maintenance and sustainability of the Gateway.
Simultaneously, 20 new studies have been added to the Catalogue since 2021 and five more are in the process of being reviewed. The Catalogue expanded its remit to include linkage studies. Even though the Catalogue was originally designed to only focus on studies with traditional longitudinal designs, the platform has been adjusted to capture and display studies that collect data through data linkage. The Catalogue now features linkage studies such as the Clinical Record Interactive Search (CRIS) system, the School Health Research Network (SHRN) and the Social and Economic Predictors of the Severe Mental Disorders Study (SEP-MD). This development enables the better representation of the wide range of rich longitudinal data available in the UK.
Augmented Metadata
Secondly, the Gateway and the Catalogue have also expanded the type of metadata they capture. The two platforms previously captured overview information about the studies, information about data utility, and information about mental health data. They now include information about physical health data and are in the process of including in-depth overviews of genetic data.
For physical health data, all studies on the Catalogue were revisited to extract what physical health information was collected at each point of data collection. This addition is useful in supporting researchers who examine the links between mental and physical health.
For genetic data, our team worked with our collaborators at Cardiff University to review existing studies on the Gateway and the Catalogue for the genetic data that these studies have collected. Our team created a template for summarising genetic variables captured in these studies. The selection of variables was refined with the insight of behavioural and molecular geneticists, and the wording was refined with the insight of members of the DATAMIND Lived Experience Advisory Group. The genetic data reviews for longitudinal studies on the Gateway and the Catalogue have been completed using this template. Its development has been useful not only in launching the inclusion of genetic data on the two platforms but also in providing an example of how to involve a range of perspectives in such an initiative.
Thirdly, the Gateway and the Catalogue each highlight the value of the other platform on their website. The Gateway features the Catalogue as a data discoverability tool, signposting users to access it for exploring the mental health measures included in UK cohort and longitudinal studies. Similarly, the Catalogue includes the Gateway as a resource useful to researchers, data custodians and patients and the public. The Catalogue also highlights when a study is featured on the Gateway by providing the direct link to its Gateway page, signposting users to additional information.
Interoperability and API Implementation
Finally, the Gateway and the Catalogue established a data strategy to become more interoperable. As part of this strategy, an Application Programming Interface (API) has been implemented on the Catalogue to host the ‘raw’ reviews of all studies included on the platform. The API now enables the
Gateway to download the metadata of the Catalogue, which facilitates the onboarding of additional information on the Gateway. The implementation of the API has also supported the development of other FAIR platforms, namely Harmony. Harmony is a digital tool that uses natural language processing to identify and compare the compatibility of different measures. It focuses on mental health questionnaire items used in different studies, and to operate, extracts information directly from the Catalogue through the recently implemented API. This part of the initiative highlights how other platforms and platform users can benefit from such FAIR activities.
Together, these initiatives have enabled the parallel development and expansion of each of the two platforms, their collaboration and co-operation, and the rise of serendipitous “gems” along the way. These efforts and outcomes support the findability and accessibility of the rich FAIR mental health data within the UK, while also making the two platforms more interoperable with one another and producing reusable material. Taken together, the collaboration between the Gateway and the Catalogue has strengthened the data discoverability infrastructure for researchers to operate within and to continue to explore mental health research opportunities.
