Understanding Mental Health Data
Despite the health, social and economic burden caused by mental health problems, research is constrained by lack of public trust and engagement. This lack of trust is exacerbated by experiences of social exclusion and/or coercive treatment. While previous research demonstrates support for sharing de-identified NHS data to NHS, academic and charity researchers, this is not the case for Industry. DATAMIND aims to address this by co-developing global standards for the use of mental health data by Industry. However, before bringing Industry, the Public and Patients together, we must facilitate conversations about data research while considering ethical issues. In this project funded by Higher Education Funding Council for Wales via Swansea University Research Wales Innovation Fund, DATAMIND will co-produce together with the McPin Foundation a data literacy course providing clarity and understanding on the use of data for research by all, including Industry.
Landscaping International Longitudinal Datasets
Louise Arseneault (FAIR Curated Mental Health Data Lead), Elena Triantafillopoulou (FAIR Curated Mental Health Data Project Manager), and the rest of their team based at King’s College London are working on the Landscaping International Longitudinal Datasets project, funded by the Wellcome Trust and in partnership with MQ Mental Health Research, the Open Data Institute, the Centre for Global Mental Health, Wellcome Lived Experience Expert Advisors, and DATAMIND. The aim of this project is to identify longitudinal datasets from across the world that can be best used to advance our understanding how brain, body and environment interact in the trajectory of anxiety, depression and psychosis. Through the project, the team has been increasing the discoverability of international longitudinal datasets worldwide.
Establishing the Eating Disorders Clinical Research Network (EDCRN)
The EDCRN aims to create a step change in the ability of researchers to perform innovative research, both in terms of simulated clinical trials and to perform biomarker studies. The extensive biorepository of samples would help to push forward research on biomarkers for eating disorders. DATAMIND will provide advice and collaborate with EDCRN on enabling and planning data linkage and its hosting on a secure trusted research environment.
Clinical Records Anonymisation and Text Extraction (CRATE)
This free open-source software enables organizations, such as NHS Trusts, to de-identify electronic health records for research, in a suitably secure environment and with appropriate ethical and information governance controls in place. The software support extraction of text (including from binary documents); person-specific and generic de-identification methods and anonymisation/pseudonymisation; techniques for de-identified linkage; natural language processing systems (to extract structured data from unstructured text); research interfaces, such as for epidemiological research; and a “consent for contact” method to support patients to choose whether they want to participate in face-to-face research. The software was developed in the University of Cambridge and has been peer-reviewed. Amongst other projects, it creates the CPFT Research Database (https://www.cpft.nhs.uk/research-database/).
The Cambridge Cognitive and Psychiatric Assessment Kit (CamCOPS)
This free open-source software enables patients, research subjects, clinicians, and researchers to record information relevant to neuropsychiatry, such as questionnaires about mood or animated tests of brain function. It was and continues to be developed at the University of Cambridge, has been peer-reviewed and subject to security testing, and is in use in the UK and elsewhere. It has roles in clinical practice as well as research. Data can be captured on mobile devices, such as a patient’s phone or tablet, and is sent securely to a server managed by the hosting organization (such as an NHS Trust or a university research department).
Medicines Discovery Catapult (MDC)
As part of DATAMIND’s business development and sustainability core activities, connections were established between DATAMIND and Medicines Discovery Catapult (MDC), including participation in their 6-monthly industrial forum. During discussions, the possibility of using genomic datasets collected as part of pharma sponsored clinical trials was proposed as a means of better understanding how antidepressants work and why they work better for some people more than others. The discussions led to the involvement of MDC and pharma partners, including J&J, who have recently made some of their data available for meta-analysis. The discussion culminated in the development of an application to Wellcome’s mental health call “Looking backwards, moving forwards” entitled “Understanding the causal mechanisms of antidepressant exposure and response” that sought to identify unpublished pharma datasets that were collected as part of a clinical trial or observational study of antidepressants. The grant was subsequently awarded, representing an investment of £4.29M in the field of mental health, strengthening links between DATAMIND, MDC and the Pharmaceutical Industry.