Data linkage can reduce the burden and increase the opportunities in the implementation of Value-Based Health Care policy: a study in patients with ulcerative colitis (PROUD-UC Study)

Walshe, John; Akbari, Ashley; Hawthorne, A Barney; Laing, Hamish

doi:10.23889/ijpds.v6i3.1705

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Data linkage can reduce the burden and increase the opportunities in the implementation of Value-Based Health Care policy: a study in patients with ulcerative colitis (PROUD-UC Study)

John Walshe, Ashley Akbari

, A Barney Hawthorne, Hamish Laing

International Journal of Population Data Science, Volume: 6, Issue: 3

Swansea University Authors: John Walshe, Ashley Akbari , Hamish Laing

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DOI (Published version): 10.23889/ijpds.v6i3.1705

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IntroductionHealthcare systems face rising demand and unsustainable cost pressures. In response, health policymakers are adopting Value-Based Health Care (VBHC), targeting available resources to achieve the best possible patient outcomes at the lowest possible cost and actively disinvesting in care...

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Published in:	International Journal of Population Data Science
ISSN:	2399-4908
Published:	Swansea University 2022
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In response, health policymakers are adopting Value-Based Health Care (VBHC), targeting available resources to achieve the best possible patient outcomes at the lowest possible cost and actively disinvesting in care of low-value. This requires the evaluation of longitudinal clinical and patient reported outcome measures (PROMs) at an individual-level and population-scale, which can create significant data challenges. Achieving this through routinely collected electronic health record (EHR) data-linkage could facilitate the implementation of VBHC without an unacceptable data burden on patients or health systems and release time for higher-value activities.ObjectivesOur study tested the ability to report an international, patient-centred outcome dataset (ICHOM-IBD) using only anonymised individual-level population-scale linked electronic health record (EHR) data sources, including clinical and patient-reported outcomes, in a cohort of patients with moderate-to-severe ulcerative colitis (UC), receiving biopharmaceutical therapies ("biologics") in a single, publicly funded, healthcare system.ResultsWe identified a cohort of 17,632 patients with UC in Wales and a cohort from two Health Boards of 447 patients with UC receiving biologics. 112 of these patients had completed 866 condition-specific PROMs during their biologics treatment. 44 out of 59 (74.6%) items in the ICHOM-IBD could be derived from routinely collected data of which a primary care source was essential for eight items and desirable for 21.ConclusionsWe demonstrated that it is possible to report most but not all the ICHOM-IBD outcomes using routinely collected data from multiple sources without additional system burden, potentially supporting Value-Based Health Care implementation with population data science. As digital collection of PROMs and use of condition-specific registries grow, greater utility of this approach can be anticipated. We have identified that the availability of longitudinal primary and secondary care data linked with PROMs is essential for this to be possible.</abstract><type>Journal Article</type><journal>International Journal of Population Data Science</journal><volume>6</volume><journalNumber>3</journalNumber><paginationStart/><paginationEnd/><publisher>Swansea University</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint/><issnElectronic>2399-4908</issnElectronic><keywords>data science; health policy; value-based health care; colitis, ulcerative; patient reported outcomemeasure; routinely collected health data</keywords><publishedDay>24</publishedDay><publishedMonth>11</publishedMonth><publishedYear>2022</publishedYear><publishedDate>2022-11-24</publishedDate><doi>10.23889/ijpds.v6i3.1705</doi><url/><notes>Availability of data and materials:The data used in this study are available in the SAIL Databankat Swansea University, Swansea, UK, but as restrictions applythey are not publicly available. All proposals to use SAILdata are subject to review by an independent InformationGovernance Review Panel (IGRP). Before any data can beaccessed, approval must be given by the IGRP. The IGRPgives careful consideration to each project to ensure properand appropriate use of SAIL data. When access has been granted, it is gained through a privacy protecting safe-haven and remote access system referred to as the SAILGateway. SAIL has established an application process to befollowed by anyone who would like to access data via SAIL athttps://www.saildatabank.com/application-process.</notes><college>COLLEGE NANME</college><CollegeCode>COLLEGE CODE</CollegeCode><institution>Swansea University</institution><apcterm>External research funder(s) paid the OA fee (includes OA grants disbursed by the Library)</apcterm><funders>JW, AA, and HL are employees of Swansea University,which received partial funding from Pfizer in connection withthe development of this manuscript.The research output relates to delivery of the EuropeanRegional Development Fund co-funded ACCELERATE projectinvolving Operations supported by the West Wales &Valleys and South-East Wales ERDF EU Structural FundsProgramme.AA and this work were supported by Health Data ResearchUK, which receives its funding from HDR UK Ltd (HDR-9006)funded by the UK Medical Research Council, Engineeringand Physical Sciences Research Council, Economic and SocialResearch Council, Department of Health and Social Care(England), Chief Scientist Office of the Scottish GovernmentHealth and Social Care Directorates, Health and Social CareResearch and Development Division (Welsh Government),Public Health Agency (Northern Ireland), British HeartFoundation (BHF) and the Wellcome Trust. This work wassupported by the ADR Wales programme of work. The ADRWales programme of work is aligned to the priority themesas identified in the Welsh Government’s national strategy:Prosperity for All. ADR Wales brings together data scienceexperts at Swansea University Medical School, staff from theWales Institute of Social and Economic Research, Data andMethods (WISERD) at Cardiff University and specialist teamswithin the Welsh Government to develop new evidence whichsupports Prosperity for All by using the SAIL Databank atSwansea University, to link and analyse anonymised data. ADRWales is part of the Economic and Social Research Council(part of UK Research and Innovation) funded ADR UK (grantES/S007393/1).</funders><projectreference/><lastEdited>2022-12-12T10:55:05.9522010</lastEdited><Created>2022-11-26T17:50:45.4120976</Created><path><level id="1">Faculty of Medicine, Health and Life Sciences</level><level id="2">Swansea University Medical School - Medicine</level></path><authors><author><firstname>John</firstname><surname>Walshe</surname><order>1</order></author><author><firstname>Ashley</firstname><surname>Akbari</surname><orcid>0000-0003-0814-0801</orcid><order>2</order></author><author><firstname>A Barney</firstname><surname>Hawthorne</surname><order>3</order></author><author><firstname>Hamish</firstname><surname>Laing</surname><orcid>0000-0002-5661-7937</orcid><order>4</order></author></authors><documents><document><filename>62059__25980__31f6e3c2d63147729c806c5e535a09f5.pdf</filename><originalFilename>document.pdf</originalFilename><uploaded>2022-12-01T16:20:53.0632438</uploaded><type>Output</type><contentLength>1304990</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><documentNotes>2022 © The Authors. 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spelling	2022-12-12T10:55:05.9522010 v2 62059 2022-11-26 Data linkage can reduce the burden and increase the opportunities in the implementation of Value-Based Health Care policy: a study in patients with ulcerative colitis (PROUD-UC Study) a3aed4279d2b0bfb22ff289d716bd82e John Walshe John Walshe true false aa1b025ec0243f708bb5eb0a93d6fb52 0000-0003-0814-0801 Ashley Akbari Ashley Akbari true false be60df55bc8e44cf2aacf7230876588d 0000-0002-5661-7937 Hamish Laing Hamish Laing true false 2022-11-26 IntroductionHealthcare systems face rising demand and unsustainable cost pressures. In response, health policymakers are adopting Value-Based Health Care (VBHC), targeting available resources to achieve the best possible patient outcomes at the lowest possible cost and actively disinvesting in care of low-value. This requires the evaluation of longitudinal clinical and patient reported outcome measures (PROMs) at an individual-level and population-scale, which can create significant data challenges. Achieving this through routinely collected electronic health record (EHR) data-linkage could facilitate the implementation of VBHC without an unacceptable data burden on patients or health systems and release time for higher-value activities.ObjectivesOur study tested the ability to report an international, patient-centred outcome dataset (ICHOM-IBD) using only anonymised individual-level population-scale linked electronic health record (EHR) data sources, including clinical and patient-reported outcomes, in a cohort of patients with moderate-to-severe ulcerative colitis (UC), receiving biopharmaceutical therapies ("biologics") in a single, publicly funded, healthcare system.ResultsWe identified a cohort of 17,632 patients with UC in Wales and a cohort from two Health Boards of 447 patients with UC receiving biologics. 112 of these patients had completed 866 condition-specific PROMs during their biologics treatment. 44 out of 59 (74.6%) items in the ICHOM-IBD could be derived from routinely collected data of which a primary care source was essential for eight items and desirable for 21.ConclusionsWe demonstrated that it is possible to report most but not all the ICHOM-IBD outcomes using routinely collected data from multiple sources without additional system burden, potentially supporting Value-Based Health Care implementation with population data science. As digital collection of PROMs and use of condition-specific registries grow, greater utility of this approach can be anticipated. We have identified that the availability of longitudinal primary and secondary care data linked with PROMs is essential for this to be possible. Journal Article International Journal of Population Data Science 6 3 Swansea University 2399-4908 data science; health policy; value-based health care; colitis, ulcerative; patient reported outcomemeasure; routinely collected health data 24 11 2022 2022-11-24 10.23889/ijpds.v6i3.1705 Availability of data and materials:The data used in this study are available in the SAIL Databankat Swansea University, Swansea, UK, but as restrictions applythey are not publicly available. All proposals to use SAILdata are subject to review by an independent InformationGovernance Review Panel (IGRP). Before any data can beaccessed, approval must be given by the IGRP. The IGRPgives careful consideration to each project to ensure properand appropriate use of SAIL data. When access has been granted, it is gained through a privacy protecting safe-haven and remote access system referred to as the SAILGateway. SAIL has established an application process to befollowed by anyone who would like to access data via SAIL athttps://www.saildatabank.com/application-process. COLLEGE NANME COLLEGE CODE Swansea University External research funder(s) paid the OA fee (includes OA grants disbursed by the Library) JW, AA, and HL are employees of Swansea University,which received partial funding from Pfizer in connection withthe development of this manuscript.The research output relates to delivery of the EuropeanRegional Development Fund co-funded ACCELERATE projectinvolving Operations supported by the West Wales &Valleys and South-East Wales ERDF EU Structural FundsProgramme.AA and this work were supported by Health Data ResearchUK, which receives its funding from HDR UK Ltd (HDR-9006)funded by the UK Medical Research Council, Engineeringand Physical Sciences Research Council, Economic and SocialResearch Council, Department of Health and Social Care(England), Chief Scientist Office of the Scottish GovernmentHealth and Social Care Directorates, Health and Social CareResearch and Development Division (Welsh Government),Public Health Agency (Northern Ireland), British HeartFoundation (BHF) and the Wellcome Trust. This work wassupported by the ADR Wales programme of work. The ADRWales programme of work is aligned to the priority themesas identified in the Welsh Government’s national strategy:Prosperity for All. ADR Wales brings together data scienceexperts at Swansea University Medical School, staff from theWales Institute of Social and Economic Research, Data andMethods (WISERD) at Cardiff University and specialist teamswithin the Welsh Government to develop new evidence whichsupports Prosperity for All by using the SAIL Databank atSwansea University, to link and analyse anonymised data. ADRWales is part of the Economic and Social Research Council(part of UK Research and Innovation) funded ADR UK (grantES/S007393/1). 2022-12-12T10:55:05.9522010 2022-11-26T17:50:45.4120976 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Medicine John Walshe 1 Ashley Akbari 0000-0003-0814-0801 2 A Barney Hawthorne 3 Hamish Laing 0000-0002-5661-7937 4 62059__25980__31f6e3c2d63147729c806c5e535a09f5.pdf document.pdf 2022-12-01T16:20:53.0632438 Output 1304990 application/pdf Version of Record true 2022 © The Authors. Open Access under CC BY 4.0 true eng https://creativecommons.org/licenses/by/4.0/deed.en
title	Data linkage can reduce the burden and increase the opportunities in the implementation of Value-Based Health Care policy: a study in patients with ulcerative colitis (PROUD-UC Study)
spellingShingle	Data linkage can reduce the burden and increase the opportunities in the implementation of Value-Based Health Care policy: a study in patients with ulcerative colitis (PROUD-UC Study) John Walshe Ashley Akbari Hamish Laing
title_short	Data linkage can reduce the burden and increase the opportunities in the implementation of Value-Based Health Care policy: a study in patients with ulcerative colitis (PROUD-UC Study)
title_full	Data linkage can reduce the burden and increase the opportunities in the implementation of Value-Based Health Care policy: a study in patients with ulcerative colitis (PROUD-UC Study)
title_fullStr	Data linkage can reduce the burden and increase the opportunities in the implementation of Value-Based Health Care policy: a study in patients with ulcerative colitis (PROUD-UC Study)
title_full_unstemmed	Data linkage can reduce the burden and increase the opportunities in the implementation of Value-Based Health Care policy: a study in patients with ulcerative colitis (PROUD-UC Study)
title_sort	Data linkage can reduce the burden and increase the opportunities in the implementation of Value-Based Health Care policy: a study in patients with ulcerative colitis (PROUD-UC Study)
author_id_str_mv	a3aed4279d2b0bfb22ff289d716bd82e aa1b025ec0243f708bb5eb0a93d6fb52 be60df55bc8e44cf2aacf7230876588d
author_id_fullname_str_mv	a3aed4279d2b0bfb22ff289d716bd82e_*_John Walshe aa1b025ec0243f708bb5eb0a93d6fb52__Ashley Akbari be60df55bc8e44cf2aacf7230876588d_**_Hamish Laing
author	John Walshe Ashley Akbari Hamish Laing
author2	John Walshe Ashley Akbari A Barney Hawthorne Hamish Laing
format	Journal article
container_title	International Journal of Population Data Science
container_volume	6
container_issue	3
publishDate	2022
institution	Swansea University
issn	2399-4908
doi_str_mv	10.23889/ijpds.v6i3.1705
publisher	Swansea University
college_str	Faculty of Medicine, Health and Life Sciences
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hierarchy_top_title	Faculty of Medicine, Health and Life Sciences
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hierarchy_parent_title	Faculty of Medicine, Health and Life Sciences
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description	IntroductionHealthcare systems face rising demand and unsustainable cost pressures. In response, health policymakers are adopting Value-Based Health Care (VBHC), targeting available resources to achieve the best possible patient outcomes at the lowest possible cost and actively disinvesting in care of low-value. This requires the evaluation of longitudinal clinical and patient reported outcome measures (PROMs) at an individual-level and population-scale, which can create significant data challenges. Achieving this through routinely collected electronic health record (EHR) data-linkage could facilitate the implementation of VBHC without an unacceptable data burden on patients or health systems and release time for higher-value activities.ObjectivesOur study tested the ability to report an international, patient-centred outcome dataset (ICHOM-IBD) using only anonymised individual-level population-scale linked electronic health record (EHR) data sources, including clinical and patient-reported outcomes, in a cohort of patients with moderate-to-severe ulcerative colitis (UC), receiving biopharmaceutical therapies ("biologics") in a single, publicly funded, healthcare system.ResultsWe identified a cohort of 17,632 patients with UC in Wales and a cohort from two Health Boards of 447 patients with UC receiving biologics. 112 of these patients had completed 866 condition-specific PROMs during their biologics treatment. 44 out of 59 (74.6%) items in the ICHOM-IBD could be derived from routinely collected data of which a primary care source was essential for eight items and desirable for 21.ConclusionsWe demonstrated that it is possible to report most but not all the ICHOM-IBD outcomes using routinely collected data from multiple sources without additional system burden, potentially supporting Value-Based Health Care implementation with population data science. As digital collection of PROMs and use of condition-specific registries grow, greater utility of this approach can be anticipated. We have identified that the availability of longitudinal primary and secondary care data linked with PROMs is essential for this to be possible.
published_date	2022-11-24T04:21:23Z
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Data linkage can reduce the burden and increase the opportunities in the implementation of Value-Based Health Care policy: a study in patients with ulcerative colitis (PROUD-UC Study)

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