Viral hepatitis is a key clinical problem, both in the UK and globally, and deaths from these infections are increasing. Chronic hepatitis infection can cause liver disease, liver cancer and other complications. Understanding more about the prevalence, treatment effectiveness, coinfections and subgroups that develop complications would help tackle this growing global concern. Further, because hepatitis B and C are significant risk factors for liver cancer, understanding more about why some people with hepatitis develop cancer and others do not can help researchers to come up with new approaches for early cancer detection.
In order to support translational research across multiple sites, an improved resource of routinely collected clinical data is needed. The National Institute for Health Research (NIHR) Health Informatics Collaborative was established to work towards the aim of a central repository of high quality clinical data for research. However, this is not an easy task, with different NHS Trusts using different computer systems and a large amount of important data being stored as free text, which is more difficult to standardise.
Published in the British Medical Journal of Health and Care Informatics, a team from five NHS Trusts (Cambridge, Guy’s and St Thomas’, Imperial College, Oxford, UCL) led by Professor Ellie Barnes (Nuffield Department of Medicine) collaborated to build the Viral Hepatitis Central Data Repository. Working under a comprehensive governance framework that has received ethical approval, this repository has initially collected anonymised data from 3500 patients across the five NHS Trusts. Data categories include basic patient information, laboratory data, treatments, diagnoses, liver conditions, hepatitis virus genotypes and other clinical information.
This work has demonstrated that routinely collected patient data can be aggregated across multiple centres to create datasets for research. The team can now use this resource to address the many key clinical questions to improve the outcomes of patients with viral hepatitis outcomes.