Informatics ApproachesInnovationPartnership Viral hepatitis patient database enables health informatics research
A comprehensive database has been developed for viral hepatitis research, linking patient data across 5 NIHR Biomedical Research Centres (BRCs).
Through NIHR Health Informatics Collaborative (HIC), a large prospective cohort of of 960 patients with chronic hepatitis B infections and 1404 patients with chronic hepatitis C infections has been collected for the first time. This database will allow research questions to be rapidly addressed using real-world data, and provide a tool for future research into the conditions. The methodology to develop a pipeline to collect and manage this data was recently published in BMJ Health & Care Informatics.
The NIHR HIC is a collaborative infrastructure programme across a network of 26 NHS Trusts, including the 20 that host NIHR BRCs, in selected therapeutic areas. The NIHR HIC viral hepatitis theme is led by Oxford University Hospitals NHS Foundation Trust and the University of Oxford, through the NIHR Oxford BRC.
This collaboration in viral hepatitis combined data across five NIHR BRCs, including a significant number of Imperial College Healthcare NHS Trust patients. As a result, a rich set of data points was identified, including information on clinical assessment, antiviral treatment, laboratory test results and health outcomes. This clinical data from different centres was standardised and combined to produce a research-ready database, which can be used to generate insights about disease prevalence and how patients respond to treatment.
Chief Investigator of the NIHR HIC viral hepatitis theme, Professor Eleanor Barnes, explained: “Electronic patient records across the NHS contain a wealth of routinely gathered clinical data that is useful for translational research, but which is not easily accessible to individual NHS trusts or researchers. There is a shortage of detailed clinical data available for patients with viral hepatitis in the UK, in particular for those infected with hepatitis B or E.
In this paper, we present a comprehensive methodology that has been validated by the NIHR HIC for the development of a new data collection and management pipeline, and show that routinely collected clinical data from patients with hepatitis C, B and E infection can be collated, integrated and made available to participating researchers. This has been an incredible joint effort between clinicians, researchers and informaticians that shows how multi-disciplinary collaboration can really make a difference to the work we are able to do for patient benefit.”
The NIHR HIC viral hepatitis theme is now in its second phase, having expanded to work collaboratively across eight NHS trusts to further advance the database and cross-centre research. At Imperial, this resource could be accessed by researchers via NIHR Imperial BRC clinical lead, Professor Graham Cooke.