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

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

doi:10.1136/bmjopen-2023-077675

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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

, Fatemeh Torabi

, Stuart Bedston, Emily Lowthian

, Hoda Abbasizanjani

, Rich Fry

, Jane Lyons, Rhiannon Owen

, Kamlesh Khunti, Ronan Lyons

BMJ Open, Volume: 14, Issue: 8

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

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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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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.</abstract><type>Journal Article</type><journal>BMJ Open</journal><volume>14</volume><journalNumber>8</journalNumber><paginationStart/><paginationEnd/><publisher>BMJ</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint/><issnElectronic>2044-6055</issnElectronic><keywords/><publishedDay>3</publishedDay><publishedMonth>8</publishedMonth><publishedYear>2024</publishedYear><publishedDate>2024-08-03</publishedDate><doi>10.1136/bmjopen-2023-077675</doi><url/><notes/><college>COLLEGE NANME</college><department>Medical School</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>MEDS</DepartmentCode><institution>Swansea University</institution><apcterm>SU Library paid the OA fee (TA Institutional Deal)</apcterm><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.</funders><projectreference/><lastEdited>2024-09-17T15:47:09.1615471</lastEdited><Created>2024-08-04T19:28:01.9244313</Created><path><level id="1">Faculty of Medicine, Health and Life Sciences</level><level id="2">Swansea University Medical School - Health Data Science</level></path><authors><author><firstname>Ashley</firstname><surname>Akbari</surname><orcid>0000-0003-0814-0801</orcid><order>1</order></author><author><firstname>Fatemeh</firstname><surname>Torabi</surname><orcid>0000-0002-5853-4625</orcid><order>2</order></author><author><firstname>Stuart</firstname><surname>Bedston</surname><order>3</order></author><author><firstname>Emily</firstname><surname>Lowthian</surname><orcid>0000-0001-9362-0046</orcid><order>4</order></author><author><firstname>Hoda</firstname><surname>Abbasizanjani</surname><orcid>0000-0002-9575-4758</orcid><order>5</order></author><author><firstname>Rich</firstname><surname>Fry</surname><orcid>0000-0002-7968-6679</orcid><order>6</order></author><author><firstname>Jane</firstname><surname>Lyons</surname><orcid/><order>7</order></author><author><firstname>Rhiannon</firstname><surname>Owen</surname><orcid>0000-0001-5977-376X</orcid><order>8</order></author><author><firstname>Kamlesh</firstname><surname>Khunti</surname><order>9</order></author><author><firstname>Ronan</firstname><surname>Lyons</surname><orcid>0000-0001-5225-000X</orcid><order>10</order></author></authors><documents><document><filename>67313__31355__04fb62a95aca47a4a4dfc7a86f8aa748.pdf</filename><originalFilename>67313.VOR.pdf</originalFilename><uploaded>2024-09-17T15:41:33.3653847</uploaded><type>Output</type><contentLength>1041739</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><documentNotes>© Author(s) (or their employer(s)) 2024. 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spelling	v2 67313 2024-08-04 Exploring ethnicity dynamics in Wales: a longitudinal population-scale linked data study and development of a harmonised ethnicity spine aa1b025ec0243f708bb5eb0a93d6fb52 0000-0003-0814-0801 Ashley Akbari Ashley Akbari true false f569591e1bfb0e405b8091f99fec45d3 0000-0002-5853-4625 Fatemeh Torabi Fatemeh Torabi true false c79d07eaba5c9515c0df82b372b76a41 Stuart Bedston Stuart Bedston true false db5bc529b8a9dfca2b4a268d14e03479 0000-0001-9362-0046 Emily Lowthian Emily Lowthian true false 93dd7e747f3118a99566c68592a3ddcc 0000-0002-9575-4758 Hoda Abbasizanjani Hoda Abbasizanjani true false d499b898d447b62c81b2c122598870e0 0000-0002-7968-6679 Rich Fry Rich Fry true false 1b74fa5125a88451c52c45bcf20e0b47 Jane Lyons Jane Lyons true false 0d30aa00eef6528f763a1e1589f703ec 0000-0001-5977-376X Rhiannon Owen Rhiannon Owen true false 83efcf2a9dfcf8b55586999d3d152ac6 0000-0001-5225-000X Ronan Lyons Ronan Lyons true false 2024-08-04 MEDS 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. Journal Article BMJ Open 14 8 BMJ 2044-6055 3 8 2024 2024-08-03 10.1136/bmjopen-2023-077675 COLLEGE NANME Medical School COLLEGE CODE MEDS Swansea University SU Library paid the OA fee (TA Institutional Deal) 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. 2024-09-17T15:47:09.1615471 2024-08-04T19:28:01.9244313 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Health Data Science Ashley Akbari 0000-0003-0814-0801 1 Fatemeh Torabi 0000-0002-5853-4625 2 Stuart Bedston 3 Emily Lowthian 0000-0001-9362-0046 4 Hoda Abbasizanjani 0000-0002-9575-4758 5 Rich Fry 0000-0002-7968-6679 6 Jane Lyons 7 Rhiannon Owen 0000-0001-5977-376X 8 Kamlesh Khunti 9 Ronan Lyons 0000-0001-5225-000X 10 67313__31355__04fb62a95aca47a4a4dfc7a86f8aa748.pdf 67313.VOR.pdf 2024-09-17T15:41:33.3653847 Output 1041739 application/pdf Version of Record true © Author(s) (or their employer(s)) 2024. This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license. true eng https://creativecommons.org/licenses/by/4.0/
title	Exploring ethnicity dynamics in Wales: a longitudinal population-scale linked data study and development of a harmonised ethnicity spine
spellingShingle	Exploring ethnicity dynamics in Wales: a longitudinal population-scale linked data study and development of a harmonised ethnicity spine Ashley Akbari Fatemeh Torabi Stuart Bedston Emily Lowthian Hoda Abbasizanjani Rich Fry Jane Lyons Rhiannon Owen Ronan Lyons
title_short	Exploring ethnicity dynamics in Wales: a longitudinal population-scale linked data study and development of a harmonised ethnicity spine
title_full	Exploring ethnicity dynamics in Wales: a longitudinal population-scale linked data study and development of a harmonised ethnicity spine
title_fullStr	Exploring ethnicity dynamics in Wales: a longitudinal population-scale linked data study and development of a harmonised ethnicity spine
title_full_unstemmed	Exploring ethnicity dynamics in Wales: a longitudinal population-scale linked data study and development of a harmonised ethnicity spine
title_sort	Exploring ethnicity dynamics in Wales: a longitudinal population-scale linked data study and development of a harmonised ethnicity spine
author_id_str_mv	aa1b025ec0243f708bb5eb0a93d6fb52 f569591e1bfb0e405b8091f99fec45d3 c79d07eaba5c9515c0df82b372b76a41 db5bc529b8a9dfca2b4a268d14e03479 93dd7e747f3118a99566c68592a3ddcc d499b898d447b62c81b2c122598870e0 1b74fa5125a88451c52c45bcf20e0b47 0d30aa00eef6528f763a1e1589f703ec 83efcf2a9dfcf8b55586999d3d152ac6
author_id_fullname_str_mv	aa1b025ec0243f708bb5eb0a93d6fb52_*_Ashley Akbari f569591e1bfb0e405b8091f99fec45d3__Fatemeh Torabi c79d07eaba5c9515c0df82b372b76a41__Stuart Bedston db5bc529b8a9dfca2b4a268d14e03479__Emily Lowthian 93dd7e747f3118a99566c68592a3ddcc__Hoda Abbasizanjani d499b898d447b62c81b2c122598870e0__Rich Fry 1b74fa5125a88451c52c45bcf20e0b47__Jane Lyons 0d30aa00eef6528f763a1e1589f703ec__Rhiannon Owen 83efcf2a9dfcf8b55586999d3d152ac6_**_Ronan Lyons
author	Ashley Akbari Fatemeh Torabi Stuart Bedston Emily Lowthian Hoda Abbasizanjani Rich Fry Jane Lyons Rhiannon Owen Ronan Lyons
author2	Ashley Akbari Fatemeh Torabi Stuart Bedston Emily Lowthian Hoda Abbasizanjani Rich Fry Jane Lyons Rhiannon Owen Kamlesh Khunti Ronan Lyons
format	Journal article
container_title	BMJ Open
container_volume	14
container_issue	8
publishDate	2024
institution	Swansea University
issn	2044-6055
doi_str_mv	10.1136/bmjopen-2023-077675
publisher	BMJ
college_str	Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id	facultyofmedicinehealthandlifesciences
hierarchy_top_title	Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id	facultyofmedicinehealthandlifesciences
hierarchy_parent_title	Faculty of Medicine, Health and Life Sciences
department_str	Swansea University Medical School - Health Data Science{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Health Data Science
document_store_str	1
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description	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.
published_date	2024-08-03T15:47:07Z
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Exploring ethnicity dynamics in Wales: a longitudinal population-scale linked data study and development of a harmonised ethnicity spine

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