National Institute for Health Research Health Informatics Collaborative: development of a pipeline to collate electronic clinical data for viral hepatitis research

Jim Davies; Charles Crichton; Eleanor Barnes; Ben Glampson; Abdulrahim Mulla; Kerrie Woods; Kosh Agarwal; David Anthony Smith; Tingyan Wang; Oliver Freeman; Hizni Salih; Philippa Clare Matthews; Kinga Anna Várnai; Christopher R. Jones; Luca Mercuri; A. Torm Shaw; Lydia N Drumright; Luis Romão; David Ramlakan; Finola Higgins; Alistair Weir; Eleni Nastouli; William Gelson; Graham S. Cooke

doi:10.1136/bmjhci-2020-100145

BMJ Health & Care Informatics (Aug 2020)

National Institute for Health Research Health Informatics Collaborative: development of a pipeline to collate electronic clinical data for viral hepatitis research

Jim Davies,
Charles Crichton,
Eleanor Barnes,
Ben Glampson,
Abdulrahim Mulla,
Kerrie Woods,
Kosh Agarwal,
David Anthony Smith,
Tingyan Wang,
Oliver Freeman,
Hizni Salih,
Philippa Clare Matthews,
Kinga Anna Várnai,
Christopher R. Jones,
Luca Mercuri,
A. Torm Shaw,
Lydia N Drumright,
Luis Romão,
David Ramlakan,
Finola Higgins,
Alistair Weir,
Eleni Nastouli,
William Gelson,
Graham S. Cooke

Affiliations

Jim Davies: NIHR Oxford Biomedical Research Centre, Big Data Institute, University of Oxford, Oxford, Oxfordshire, UK
Charles Crichton: NIHR Oxford Biomedical Research Centre, Big Data Institute, University of Oxford, Oxford, Oxfordshire, UK
Eleanor Barnes: Oxford University Hospitals NHS Foundation Trust, Oxford, Oxfordshire, UK
Ben Glampson: Research Informatics Team, Imperial College Healthcare NHS Trust, London, UK
Abdulrahim Mulla: Research Informatics Team, Imperial College Healthcare NHS Trust, London, UK
Kerrie Woods: Oxford University Hospitals NHS Foundation Trust, Oxford, Oxfordshire, UK
Kosh Agarwal: Institute of Liver Studies, King's College London, London, UK
David Anthony Smith: Oxford University Hospitals NHS Foundation Trust, Oxford, Oxfordshire, UK
Tingyan Wang: NIHR Oxford Biomedical Research Centre, Big Data Institute, University of Oxford, Oxford, Oxfordshire, UK
Oliver Freeman: NIHR Oxford Biomedical Research Centre, Big Data Institute, University of Oxford, Oxford, Oxfordshire, UK
Hizni Salih: NIHR Oxford Biomedical Research Centre, Big Data Institute, University of Oxford, Oxford, Oxfordshire, UK
Philippa Clare Matthews: Nuffield Department of Medicine, University of Oxford, Oxford, Oxfordshire, UK
Kinga Anna Várnai: Oxford University Hospitals NHS Foundation Trust, Oxford, Oxfordshire, UK
Christopher R. Jones: Department of Infectious Disease, St Mary’s Campus, Imperial College London, London, UK
Luca Mercuri: Research Informatics Team, Imperial College Healthcare NHS Trust, London, UK
A. Torm Shaw: Clinical Trials Centre, Winston Churchill Wing, St Mary’s Campus, Imperial College London, London, UK
Lydia N Drumright: Cambridge University Hospitals NHS Foundation Trust, Cambridge, Cambridgeshire, UK
Luis Romão: National Institute for Health Research Biomedical Research Centre, University College London Hospitals, London, UK
David Ramlakan: National Institute for Health Research Biomedical Research Centre, University College London Hospitals, London, UK
Finola Higgins: Guy's and Saint Thomas' Hospitals NHS Trust, London, UK
Alistair Weir: Guy's and Saint Thomas' Hospitals NHS Trust, London, UK
Eleni Nastouli: National Institute for Health Research Biomedical Research Centre, University College London Hospitals, London, UK
William Gelson: Cambridge University Hospitals NHS Foundation Trust, Cambridge, Cambridgeshire, UK
Graham S. Cooke: Department of Infectious Disease, St Mary’s Campus, Imperial College London, London, UK

DOI: https://doi.org/10.1136/bmjhci-2020-100145
Journal volume & issue: Vol. 27, no. 3

Abstract

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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.

Published in BMJ Health & Care Informatics

ISSN: 2632-1009 (Online)
Publisher: BMJ Publishing Group
Country of publisher: United Kingdom
LCC subjects: Medicine: Medicine (General): Computer applications to medicine. Medical informatics
Website: https://informatics.bmj.com/

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