National Institute for Health Research Health Informatics Collaborative (NIHR HIC): Development of a Pipeline to Collate Electronic Clinical Data for Viral Hepatitis Research
Authors: Smith David A , Wang Tingyan , Freeman Oliver , Crichton Charles , Salih Hizni , Matthews Philippa C , Davies Jim , Várnai Kinga A , Woods Kerrie , Jones Christopher R. , Glampson Ben , Mulla Abdulrahim , Mercuri Luca , Shaw A. Torm , Drumright Lydia , Romão Luis , Ramlakan David , Higgins Finola , Weir Alistair , Nastouli Eleni , Agarwal Kosh , Gelson William , Cooke Graham S. , Barnes Eleanor 
Published: December 2019

ABSTRACTObjectiveThe National Institute of Health Research (NIHR) Health Informatics Collaborative (HIC) is a programme of infrastructure development across NIHR Biomedical Research Centres (BRCs). The aim of the NIHR HIC is to improve the quality and availability of routinely-collected data for collaborative, cross-centre research. This is demonstrated through research collaborations in selected therapeutic areas, one of which is viral hepatitis.DesignThe collaboration in viral hepatitis identified a rich set of data points, including information on clinical assessment, antiviral treatment, laboratory test results, and health outcomes. Clinical data from different centres was standardised and combined to produce a research-ready dataset; this was used to generate insights regarding disease prevalence and treatment response.ResultsA comprehensive database has been developed for potential viral hepatitis research interests, with a corresponding data dictionary for researchers across the centres. An initial cohort of 960 patients with chronic hepatitis B infections and 950 patients with chronic hepatitis C infections has been collected.ConclusionFor the first time, large prospective cohorts are being formed within NHS secondary care services that will allow research questions to be rapidly addressed using real world data. Interactions with industry partners will help to shape future research and will inform patient-stratified clinical practice. An emphasis on NHS-wide systems interoperability, and the increased utilisation of structured data solutions for electronic patient records, is improving access to data for research, service improvement and the reduction of clinical data gaps.SUMMARYWhat is already known?Electronic Patient Records in NHS trusts contain a wealth of routinely-collected clinical data useful for translational research. However, this data is not easily accessible to the individual NHS Trust or researchers.There is a shortage of detailed clinical data available for patients with viral hepatitis in the UK, in particular for patients infected with the hepatitis B or E viruses.What does this paper add?We present a comprehensive methodology that has been proposed, implemented and validated by the NIHR HIC for the development of a new data collection and management pipeline.We show that routinely-collected clinical data from patients with hepatitis C, B and E infection can be collated, integrated and made available to researchers automatically from 5 large NHS trusts.We describe the initial data collected from 906 hepatitis B infected patients and 1404 hepatitis C infected patients.