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

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, c...

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Main Authors: 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
Format: Article
Language:English
Published: BMJ Publishing Group 2020-08-01
Series:BMJ Health & Care Informatics
Online Access:https://informatics.bmj.com/content/27/3/e100145.full
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author 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
spellingShingle 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
National Institute for Health Research Health Informatics Collaborative: development of a pipeline to collate electronic clinical data for viral hepatitis research
BMJ Health & Care Informatics
author_facet 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
author_sort Jim Davies
title National Institute for Health Research Health Informatics Collaborative: development of a pipeline to collate electronic clinical data for viral hepatitis research
title_short National Institute for Health Research Health Informatics Collaborative: development of a pipeline to collate electronic clinical data for viral hepatitis research
title_full National Institute for Health Research Health Informatics Collaborative: development of a pipeline to collate electronic clinical data for viral hepatitis research
title_fullStr National Institute for Health Research Health Informatics Collaborative: development of a pipeline to collate electronic clinical data for viral hepatitis research
title_full_unstemmed National Institute for Health Research Health Informatics Collaborative: development of a pipeline to collate electronic clinical data for viral hepatitis research
title_sort national institute for health research health informatics collaborative: development of a pipeline to collate electronic clinical data for viral hepatitis research
publisher BMJ Publishing Group
series BMJ Health & Care Informatics
issn 2632-1009
publishDate 2020-08-01
description 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.
url https://informatics.bmj.com/content/27/3/e100145.full
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spelling doaj-faf6aa537b494d39b3361ebf8aaf68532021-02-06T21:00:12ZengBMJ Publishing GroupBMJ Health & Care Informatics2632-10092020-08-0127310.1136/bmjhci-2020-100145National Institute for Health Research Health Informatics Collaborative: development of a pipeline to collate electronic clinical data for viral hepatitis researchJim Davies0Charles Crichton1Eleanor Barnes2Ben Glampson3Abdulrahim Mulla4Kerrie Woods5Kosh Agarwal6David Anthony Smith7Tingyan Wang8Oliver Freeman9Hizni Salih10Philippa Clare Matthews11Kinga Anna Várnai12Christopher R. Jones13Luca Mercuri14A. Torm Shaw15Lydia N Drumright16Luis Romão17David Ramlakan18Finola Higgins19Alistair Weir20Eleni Nastouli21William Gelson22Graham S. Cooke23NIHR Oxford Biomedical Research Centre, Big Data Institute, University of Oxford, Oxford, Oxfordshire, UKNIHR Oxford Biomedical Research Centre, Big Data Institute, University of Oxford, Oxford, Oxfordshire, UKOxford University Hospitals NHS Foundation Trust, Oxford, Oxfordshire, UKResearch Informatics Team, Imperial College Healthcare NHS Trust, London, UKResearch Informatics Team, Imperial College Healthcare NHS Trust, London, UKOxford University Hospitals NHS Foundation Trust, Oxford, Oxfordshire, UKInstitute of Liver Studies, King's College London, London, UKOxford University Hospitals NHS Foundation Trust, Oxford, Oxfordshire, UKNIHR Oxford Biomedical Research Centre, Big Data Institute, University of Oxford, Oxford, Oxfordshire, UKNIHR Oxford Biomedical Research Centre, Big Data Institute, University of Oxford, Oxford, Oxfordshire, UKNIHR Oxford Biomedical Research Centre, Big Data Institute, University of Oxford, Oxford, Oxfordshire, UKNuffield Department of Medicine, University of Oxford, Oxford, Oxfordshire, UKOxford University Hospitals NHS Foundation Trust, Oxford, Oxfordshire, UKDepartment of Infectious Disease, St Mary’s Campus, Imperial College London, London, UKResearch Informatics Team, Imperial College Healthcare NHS Trust, London, UKClinical Trials Centre, Winston Churchill Wing, St Mary’s Campus, Imperial College London, London, UKCambridge University Hospitals NHS Foundation Trust, Cambridge, Cambridgeshire, UKNational Institute for Health Research Biomedical Research Centre, University College London Hospitals, London, UKNational Institute for Health Research Biomedical Research Centre, University College London Hospitals, London, UKGuy's and Saint Thomas' Hospitals NHS Trust, London, UKGuy's and Saint Thomas' Hospitals NHS Trust, London, UKNational Institute for Health Research Biomedical Research Centre, University College London Hospitals, London, UKCambridge University Hospitals NHS Foundation Trust, Cambridge, Cambridgeshire, UKDepartment of Infectious Disease, St Mary’s Campus, Imperial College London, London, UKObjective 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.https://informatics.bmj.com/content/27/3/e100145.full