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Ethnicity data resource in population-wide health records: completeness, coverage and granularity of diversity

Pineda-Moncusí, Marta; Allery, Freya; Delmestri, Antonella; Bolton, Thomas; Nolan, John; Thygesen, Johan H; Handy, Alex; ... CVD-COVID-UK/COVID-IMPACT Consortium; + view all (2024) Ethnicity data resource in population-wide health records: completeness, coverage and granularity of diversity. Scientific Data , 11 (1) , Article 221. 10.1038/s41597-024-02958-1. Green open access

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Abstract

Intersectional social determinants including ethnicity are vital in health research. We curated a population-wide data resource of self-identified ethnicity data from over 60 million individuals in England primary care, linking it to hospital records. We assessed ethnicity data in terms of completeness, consistency, and granularity and found one in ten individuals do not have ethnicity information recorded in primary care. By linking to hospital records, ethnicity data were completed for 94% of individuals. By reconciling SNOMED-CT concepts and census-level categories into a consistent hierarchy, we organised more than 250 ethnicity sub-groups including and beyond "White", "Black", "Asian", "Mixed" and "Other, and found them to be distributed in proportions similar to the general population. This large observational dataset presents an algorithmic hierarchy to represent self-identified ethnicity data collected across heterogeneous healthcare settings. Accurate and easily accessible ethnicity data can lead to a better understanding of population diversity, which is important to address disparities and influence policy recommendations that can translate into better, fairer health for all.

Type: Article
Title: Ethnicity data resource in population-wide health records: completeness, coverage and granularity of diversity
Location: England
Open access status: An open access version is available from UCL Discovery
DOI: 10.1038/s41597-024-02958-1
Publisher version: http://dx.doi.org/10.1038/s41597-024-02958-1
Language: English
Additional information: This work is licensed under a Creative Commons Attribution 4.0 International License. The images or other third-party material in this article are included in the Creative Commons license, unless indicated otherwise in the credit line; if the material is not included under the Creative Commons license, users will need to obtain permission from the license holder to reproduce the material. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/
Keywords: Humans, Ethnicity
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Health Informatics
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Health Informatics > Clinical Epidemiology
URI: https://discovery.ucl.ac.uk/id/eprint/10188263
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