Dataset Information

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

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.

SUBMITTER: Pineda-Moncusi M

PROVIDER: S-EPMC10883937 | biostudies-literature | 2024 Feb

REPOSITORIES: biostudies-literature

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

Pineda-Moncusí Marta M Allery Freya F Delmestri Antonella A Bolton Thomas T Nolan John J Thygesen Johan H JH Handy Alex A Banerjee Amitava A Denaxas Spiros S Tomlinson Christopher C Denniston Alastair K AK Sudlow Cathie C Akbari Ashley A Wood Angela A Collins Gary S GS Petersen Irene I Coates Laura C LC Khunti Kamlesh K Prieto-sAlhambra Daniel D Khalid Sara S

Scientific data 20240222 1

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 ...[more]

PMID: 38388690

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Project description:BackgroundLow birthweight (< 2500 g) is an important marker of maternal health and is associated with neonatal mortality, long-term development and chronic diseases. Household surveys remain an important source of population-based birthweight information, notably Demographic and Health Surveys (DHS) and UNICEF's Multiple Indicator Cluster Surveys (MICS); however, data quality concerns remain. Few studies have addressed how to close these gaps in surveys.MethodsThe EN-INDEPTH population-based survey of 69,176 women was undertaken in five Health and Demographic Surveillance System sites (Matlab-Bangladesh, Dabat-Ethiopia, Kintampo-Ghana, Bandim-Guinea-Bissau, IgangaMayuge-Uganda). Responses to existing DHS/MICS birthweight questions on 14,411 livebirths were analysed and estimated adjusted odds ratios (aORs) associated with reporting weighing, birthweight and heaping reported. Twenty-eight focus group discussions with women and interviewers explored barriers and enablers to reporting birthweight.ResultsAlmost all women provided responses to birthweight survey questions, taking on average 0.2 min to answer. Of all babies, 62.4% were weighed at birth, 53.8% reported birthweight and 21.1% provided health cards with recorded birthweight. High levels of heterogeneity were observed between sites. Home births and neonatal deaths were less likely to be weighed at birth (home births aOR 0.03(95%CI 0.02-0.03), neonatal deaths (aOR 0.19(95%CI 0.16-0.24)), and when weighed, actual birthweight was less likely to be known (aOR 0.44(95%CI 0.33-0.58), aOR 0.30(95%CI 0.22-0.41)) compared to facility births and post-neonatal survivors. Increased levels of maternal education were associated with increases in reporting weighing and knowing birthweight. Half of recorded birthweights were heaped on multiples of 500 g. Heaping was more common in IgangaMayuge (aOR 14.91(95%CI 11.37-19.55) and Dabat (aOR 14.25(95%CI 10.13-20.3) compared to Bandim. Recalled birthweights were more heaped than those recorded by card (aOR 2.59(95%CI 2.11-3.19)). A gap analysis showed large missed opportunity between facility birth and known birthweight, especially for neonatal deaths. Qualitative data suggested that knowing their baby's weight was perceived as valuable by women in all sites, but lack of measurement and poor communication, alongside social perceptions and spiritual beliefs surrounding birthweight, impacted women's ability to report birthweight.ConclusionsSubstantial data gaps remain for birthweight data in household surveys, even amongst facility births. Improving the accuracy and recording of birthweights, and better communication with women, for example using health cards, could improve survey birthweight data availability and quality.

Project description:ContextDuring 1994-1997, approximately 70% and 60% of the cases of conditions reported to the National Notifiable Diseases Surveillance System included persons of known race and ethnicity, respectively. A major goal of the Healthy People 2020 initiative is to eliminate health disparities.ObjectiveTo describe trends in the completeness of race and ethnicity in case reports of the National Notifiable Diseases Surveillance System during 2006-2010.MethodsThe National Notifiable Diseases Surveillance System is a public health surveillance system that aggregates case reports of infectious diseases and conditions that are designated nationally notifiable and are collected by US states and territories. The Centers for Disease Control and Prevention (Atlanta, Georgia) maintains this surveillance system in collaboration with the Council of State and Territorial Epidemiologists. We used Cochran-Armitage Trend Test (SAS, version 9.2) to test the hypothesis that the percentage of case reports with the completeness of race and ethnicity data increased or decreased linearly during 2006-2010.Main outcome measureCompleteness of race and ethnicity variables.ResultsThe 32 conditions reviewed included 1 030 804 case records. Seventy percent of records included a known value for race, and 49% of records included ethnicity during 2006-2010. During 2006-2010, race was known in 70% or more of records in 24 of 32 conditions and in 23 of 51 jurisdictions. During 2006-2010, the systemwide reporting of race remained at the same level of completeness (70%) but the reporting of ethnicity increased slightly from 48% in 2006 to 53% in 2010. In comparison with race, the proportions of records coded to ethnicity were less among all conditions.ConclusionsSignificant change has occurred in the completeness of reporting of ethnicity but not race during 2006-2010. However, the reporting of ethnicity still lags substantially behind the reporting of race. Jurisdictions that identify conditions with lower rates of completeness of race and ethnicity can assess the net benefits of efforts to improve the completeness of race and ethnicity data.

Dataset Information

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

Publications

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

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