For the first time, a comprehensive database comprising an initial cohort of more than 1,300 patients with chronic hepatitis B or hepatitis C infections has been developed for potential future research into the conditions.
The methodology to develop a pipeline to collect and manage this data has been presented in a paper published in BMJ Health & Care Informatics.
The work has been done under the auspices of the National Institute for Health Research (NIHR) Health Informatics Collaborative (HIC), which was established in 2014 to make routinely collected clinical data available for translational research across multiple sites.
The NIHR HIC is a programme of infrastructure development across a network of 26 NHS Trusts, including the 20 that host NIHR Biomedical Research Centres (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.
The collaboration in viral hepatitis identified a rich set of data points, 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.
The database comprises an initial cohort of 960 patients with chronic hepatitis B infections and 1,404 patients with chronic hepatitis C infections. The database has a corresponding data dictionary for researchers across the centres, which outlines the variables in the dataset.
“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,” said Professor Eleanor Barnes, the Chief Investigator of the NIHR HIC viral hepatitis theme, and a professor of hepatology at the University of Oxford’s Nuffield Department of Medicine.
“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.”
“In this way, researchers in this area will be able to tackle important questions using real-world data.”
The NIHR HIC viral hepatitis theme, which initially consisted of five large NHS trusts, is now in its second phase, and has expanded to work collaboratively across eight NHS trusts to further advance the database and cross-centre research.