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Exploring ethnicity dynamics in Wales: a longitudinal population-scale linked data study and development of a harmonised ethnicity spine

Ashley Akbari Orcid Logo, Fatemeh Torabi Orcid Logo, Stuart Bedston, Emily Lowthian Orcid Logo, Hoda Abbasizanjani Orcid Logo, Rich Fry Orcid Logo, Jane Lyons, Rhiannon Owen Orcid Logo, Kamlesh Khunti, Ronan Lyons Orcid Logo

BMJ Open, Volume: 14, Issue: 8

Swansea University Authors: Ashley Akbari Orcid Logo, Fatemeh Torabi Orcid Logo, Stuart Bedston, Emily Lowthian Orcid Logo, Hoda Abbasizanjani Orcid Logo, Rich Fry Orcid Logo, Jane Lyons, Rhiannon Owen Orcid Logo, Ronan Lyons Orcid Logo

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DOI (Published version): 10.1136/bmjopen-2023-077675

Abstract

Objective This study aims to create a national ethnicity spine based on all available ethnicity records in linkable anonymised electronic health record and administrative data sources.Design A longitudinal study using anonymised individual-level population-scale ethnicity data from 26 data sources a...

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Published in: BMJ Open
ISSN: 2044-6055
Published: BMJ 2024
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URI: https://cronfa.swan.ac.uk/Record/cronfa67313
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Abstract: Objective This study aims to create a national ethnicity spine based on all available ethnicity records in linkable anonymised electronic health record and administrative data sources.Design A longitudinal study using anonymised individual-level population-scale ethnicity data from 26 data sources available within the Secure Anonymised Information Linkage Databank.Setting The national ethnicity spine is created based on longitudinal national data for the population of Wales-UK over 22 years (between 2000 and 2021).Procedure and participants A total of 46 million ethnicity records for 4 297 694 individuals have been extracted, harmonised, deduplicated and made available within a longitudinal research ready data asset.Outcome measures (1) Comparing the distribution of ethnicity records over time for four different selection approaches (latest, mode, weighted mode and composite) across age bands, sex, deprivation quintiles, health board and residential location and (2) distribution and completeness of records against the ONS census 2011.Results The distribution of the dominant group (white) is minimally affected based on the four different selection approaches. Across all other ethnic group categorisations, the mixed group was most susceptible to variation in distribution depending on the selection approach used and varied from a 0.6% prevalence across the latest and mode approach to a 1.1% prevalence for the weighted mode, compared with the 3.1% prevalence for the composite approach. Substantial alignment was observed with ONS 2011 census with the Latest group method (kappa=0.68, 95% CI (0.67 to 0.71)) across all subgroups. The record completeness rate was over 95% in 2021.Conclusion In conclusion, our development of the population-scale ethnicity spine provides robust ethnicity measures for healthcare research in Wales and a template which can easily be deployed in other trusted research environments in the UK and beyond.
College: Faculty of Medicine, Health and Life Sciences
Funders: This work was supported by the Con-COV team funded by the Medical Research Council (grant number: MR/V028367/1). This work was supported by Health Data Research UK, which receives its funding from HDR UK (HDR-9006) funded by the UK Medical Research Council, Engineering and Physical Sciences Research Council, Economic and Social Research Council, Department of Health and Social Care (England), Chief 14 Scientist Office of the Scottish Government Health and Social Care Directorates, Health and Social Care Research and Development Division (Welsh Government), Public Health Agency (Northern Ireland), British Heart Foundation (BHF) and the Wellcome Trust. This work was supported by the ADR Wales programme of work. The ADR Wales programme of work is aligned with the priority themes as identified in the Welsh Government's national strategy: Prosperity for All. ADR Wales brings together data science experts at Swansea University Medical School, staff from the Wales Institute of Social and Economic Research, Data and Methods (WISERD) at Cardiff University and specialist teams within the Welsh Government to develop new evidence which supports Prosperity for All by using the SAIL Databank at Swansea University, to link and analyse anonymised data. ADR Wales is part of the Economic and Social Research Council (part of UK Research and Innovation) funded ADR UK (grant ES/S007393/1). This work was supported by the Wales COVID-19 Evidence Centre, funded by Health and Care Research Wales. KK is supported by the National Institute Health and Care Research (NIHR) Applied Research Collaboration East Midlands (ARC-EM) and the NIHR Biomedical Research Centre.
Issue: 8

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