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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)
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
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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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.
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.
data science; health policy; value-based health care; colitis, ulcerative; patient reported outcomemeasure; routinely collected health data
Faculty of Medicine, Health and Life Sciences
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).