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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BMJ Publishing Group
2020-08-01
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Series: | BMJ Health & Care Informatics |
Online Access: | https://informatics.bmj.com/content/27/3/e100145.full |
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Article |
collection |
DOAJ |
language |
English |
format |
Article |
sources |
DOAJ |
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 |
work_keys_str_mv |
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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 |