Managing and exploiting routinely collected NHS data for research

<p><strong>Introduction</strong> Health research using routinely collected National Health Service (NHS) data derived from electronic health records (EHRs) and health service information systems has been growing in both importance and quantity. Wide population coverage and detailed...

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Main Authors: Vasa Curcin, Michael Soljak, Azeem Majeed
Format: Article
Language:English
Published: BCS, The Chartered Institute for IT 2013-09-01
Series:Journal of Innovation in Health Informatics
Online Access:http://hijournal.bcs.org/index.php/jhi/article/view/1
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spelling doaj-b7d87970a5ca46f48bfb92cddd249c002020-11-24T23:04:29ZengBCS, The Chartered Institute for ITJournal of Innovation in Health Informatics2058-45552058-45632013-09-0120422523110.14236/jhi.v20i4.11Managing and exploiting routinely collected NHS data for researchVasa Curcin0Michael Soljak1Azeem Majeed2Department of Computing Imperial College LondonDepartment of Primary Care and Public Health Imperial College LondonDepartment of Primary Care and Public Health Imperial College London<p><strong>Introduction</strong> Health research using routinely collected National Health Service (NHS) data derived from electronic health records (EHRs) and health service information systems has been growing in both importance and quantity. Wide population coverage and detailed patient-level information allow this data to be applied to a variety of research questions. However, the sensitivity, complexity and scale of such data also hamper researchers from fully exploiting this potential.</p><p><strong>Objective</strong> Here, we establish the current challenges preventing researchers from making optimal use of the data sets at their disposal, on both the legislative and practical levels, and give recommendations as to how these challenges can be overcome.</p><p><strong>Method</strong> A number of projects has recently been launched in the UK to address poor research data management practices. Rapid Organisation of Healthcare Research Data (ROHRD) at Imperial College, London produced a useful prototype that provides local researchers with a one-stop index of available data sets together with relevant metadata.</p><p><strong>Findings</strong> Increased transparency of data sets’ availability and their provenance leads to better utilisation and facilitates compliance with regulatory requirements.</p><p><strong>Discussion</strong> Research data resulting from NHS data is often not utilised fully, or is handled in a haphazard manner that prevents full auditability of the research. Furthermore, lack of informatics and data management skills in research teams act as a barrier to implementing more advanced practices, such as provenance capture and detailed, regularly updated, data management strategies. Only by a concerted effort at the levels of research organisations, funding bodies and publishers, can we achieve full transparency and reproducibility of the research.</p>http://hijournal.bcs.org/index.php/jhi/article/view/1
collection DOAJ
language English
format Article
sources DOAJ
author Vasa Curcin
Michael Soljak
Azeem Majeed
spellingShingle Vasa Curcin
Michael Soljak
Azeem Majeed
Managing and exploiting routinely collected NHS data for research
Journal of Innovation in Health Informatics
author_facet Vasa Curcin
Michael Soljak
Azeem Majeed
author_sort Vasa Curcin
title Managing and exploiting routinely collected NHS data for research
title_short Managing and exploiting routinely collected NHS data for research
title_full Managing and exploiting routinely collected NHS data for research
title_fullStr Managing and exploiting routinely collected NHS data for research
title_full_unstemmed Managing and exploiting routinely collected NHS data for research
title_sort managing and exploiting routinely collected nhs data for research
publisher BCS, The Chartered Institute for IT
series Journal of Innovation in Health Informatics
issn 2058-4555
2058-4563
publishDate 2013-09-01
description <p><strong>Introduction</strong> Health research using routinely collected National Health Service (NHS) data derived from electronic health records (EHRs) and health service information systems has been growing in both importance and quantity. Wide population coverage and detailed patient-level information allow this data to be applied to a variety of research questions. However, the sensitivity, complexity and scale of such data also hamper researchers from fully exploiting this potential.</p><p><strong>Objective</strong> Here, we establish the current challenges preventing researchers from making optimal use of the data sets at their disposal, on both the legislative and practical levels, and give recommendations as to how these challenges can be overcome.</p><p><strong>Method</strong> A number of projects has recently been launched in the UK to address poor research data management practices. Rapid Organisation of Healthcare Research Data (ROHRD) at Imperial College, London produced a useful prototype that provides local researchers with a one-stop index of available data sets together with relevant metadata.</p><p><strong>Findings</strong> Increased transparency of data sets’ availability and their provenance leads to better utilisation and facilitates compliance with regulatory requirements.</p><p><strong>Discussion</strong> Research data resulting from NHS data is often not utilised fully, or is handled in a haphazard manner that prevents full auditability of the research. Furthermore, lack of informatics and data management skills in research teams act as a barrier to implementing more advanced practices, such as provenance capture and detailed, regularly updated, data management strategies. Only by a concerted effort at the levels of research organisations, funding bodies and publishers, can we achieve full transparency and reproducibility of the research.</p>
url http://hijournal.bcs.org/index.php/jhi/article/view/1
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