Advancing Coordinated Mental Health Research

Welcome to DATAMIND’s report on Severe Mental Illness and Cardiometabolic Risk Factors: Data availability in Electronic Health Records (EHRs) and longitudinal studies across the four nations of the United Kingdom

DATAMIND is dedicated to enabling coordinated mental health data research in the UK. DATAMIND’s “Linking Physical and Mental Health in Severe Mental Illness (SMI) Roadbuilder 3” has produced a comprehensive report about linking physical and mental health. Below, we provide a glimpse of the highlights.

DATAMIND’s Roadbuilder 3 conducted a thorough analysis of the availability of electronic health record (EHR) data across the UK, with a specific focus on of the data available to study physical health aspects in people with severe mental illness (SMI). Our objective was to explore how EHR data was accessible and beneficial across the UK.

We wanted to know:

  • What EHR records are available in each of the four nations of the UK?
  • Can we use data collected as part of existing longitudinal and cohort studies to learn about the physical health of people with severe mental illness (SMI)?
  • How do different parts of the UK define SMI, and how do they record it?
  • Do EHRs in the UK have important health information for people with SMI, like BMI, smoking status, blood pressure, cholesterol levels, blood sugar, and HbA1c? If so, how well recorded are these?

Key Findings

Numerous datasets have relevant health information across the UK. These range from local repositories to national databases like the SAIL databank covering Wales. However, no single resource provides complete coverage across all four UK nations. Despite advances in EHR accessibility, such as the introduction of trusted research environments, challenges persist. For example differences in the ways SMI is defined. Key information, such as BMI, smoking status and blood pressure are well recorded in EHRs for people with SMI, but not always regularly. While some cohort or longitudinal studies may provide information on people with SMI, only those with a large number of patients or focus on mental health will be suitable for research.

People with severe mental illness are more likely to suffer poor physical health than the general population. It is therefore really important that we harmonise data sources and definitions to enable robust research into the physical health of people with SMI”

Naomi Launders, Research Fellow in Mental Health Epidemiology/Data Science at UCL

Conclusions

While UK EHRs offer a rich source for mental health research, inconsistencies in SMI definitions and data structures hinder research into of physical health aspects of people’s lives. Harmonising data resources, improving access to data, and standardising definitions are essential to propel research forward.

Ready to dive deeper? Download or view the complete report for comprehensive details on methodologies, results, and recommendations.

Key resources

Cohort resources
  • The UK Longitudinal Linkage Collaboration (UK LLC) provides a record linkage service to UK Longitudinal Population Studies and a secure mechanism for researcher access.
  • The UK Longitudinal Linkage Collaboration (UK LLC) provides a record linkage service to UK Longitudinal Population Studies and a secure mechanism for researcher access.
EHR resources
  • The HDR UK phenotype library provides phenotyping algorithms and code lists for EHR research
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