RT Journal Article
SR Electronic
T1 National Institute for Health Research Health Informatics Collaborative: development of a pipeline to collate electronic clinical data for viral hepatitis research
JF BMJ Health & Care Informatics
JO BMJ Health Care Inform
FD BMJ Publishing Group Ltd
SP e100145
DO 10.1136/bmjhci-2020-100145
VO 27
IS 3
A1 David Anthony Smith
A1 Tingyan Wang
A1 Oliver Freeman
A1 Charles Crichton
A1 Hizni Salih
A1 Philippa Clare Matthews
A1 Jim Davies
A1 Kinga Anna Várnai
A1 Kerrie Woods
A1 Christopher R. Jones
A1 Ben Glampson
A1 Abdulrahim Mulla
A1 Luca Mercuri
A1 A. Torm Shaw
A1 Lydia N Drumright
A1 Luis Romão
A1 David Ramlakan
A1 Finola Higgins
A1 Alistair Weir
A1 Eleni Nastouli
A1 Kosh Agarwal
A1 William Gelson
A1 Graham S. Cooke
A1 Eleanor Barnes
YR 2020
UL http://informatics.bmj.com/content/27/3/e100145.abstract
AB Objective The National Institute for Health Research (NIHR) Health Informatics Collaborative (HIC) is a programme of infrastructure development across NIHR Biomedical Research Centres. 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.Design The collaboration in viral hepatitis identified a rich set of datapoints, including information on clinical assessment, antiviral treatment, laboratory test results and health outcomes. Clinical data from different centres were standardised and combined to produce a research-ready dataset; this was used to generate insights regarding disease prevalence and treatment response.Results A 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 1404 patients with chronic hepatitis C infections has been collected.Conclusion For the first time, large prospective cohorts are being formed within National Health Service (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.