The accuracy of race &amp; ethnicity data in US based healthcare databases: A systematic review

Johnson, Josh A.; Moore, Brandon; Hwang, Eun Kyeong; Hickner, Andy; Yeo, Heather

doi:10.1016/j.amjsurg.2023.05.011

Cited by 15 publications

(14 citation statements)

References 47 publications

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“…Our preliminary findings, although small in sample size, were consistent with a recent systematic review of 43 U.S.-based studies that showed EHRs frequently had "incomplete and/or inaccurate data on the race/ethnicity of patients" [43]. In contrast, disease registries or databases had highly accurate data for White and Black subjects, but relatively high rates of "misclassification and incomplete data for Hispanic/Latinx patients" [43]. The most misclassified populations were Asians, Pacific Islanders, and American Indian/Alaska Native (AI/AN) peoples [43].…”

Section: Discussionsupporting

confidence: 89%

A Customized Human Mitochondrial DNA Database (hMITO DB v1.0) for Rapid Sequence Analysis, Haplotyping and Geo-Mapping

Shen-Gunther,

Gunther,

Cai

et al. 2023

IJMS

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The field of mitochondrial genomics has advanced rapidly and has revolutionized disciplines such as molecular anthropology, population genetics, and medical genetics/oncogenetics. However, mtDNA next-generation sequencing (NGS) analysis for matrilineal haplotyping and phylogeographic inference remains hindered by the lack of a consolidated mitogenome database and an efficient bioinformatics pipeline. To address this, we developed a customized human mitogenome database (hMITO DB) embedded in a CLC Genomics workflow for read mapping, variant analysis, haplotyping, and geo-mapping. The database was constructed from 4286 mitogenomes. The macro-haplogroup (A to Z) distribution and representative phylogenetic tree were found to be consistent with published literature. The hMITO DB automated workflow was tested using mtDNA-NGS sequences derived from Pap smears and cervical cancer cell lines. The auto-generated read mapping, variants track, and table of haplotypes and geo-origins were completed in 15 min for 47 samples. The mtDNA workflow proved to be a rapid, efficient, and accurate means of sequence analysis for translational mitogenomics.

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Section: Discussionsupporting

confidence: 89%

A Customized Human Mitochondrial DNA Database (hMITO DB v1.0) for Rapid Sequence Analysis, Haplotyping and Geo-Mapping

Shen-Gunther,

Gunther,

Cai

et al. 2023

IJMS

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“…Concerns that mixed-race patients are not clearly assigned by 2009 CKD-EPI calculations [23,24,26,31,32,40,41,[43][44][45][46]48,52,57,59,69] affect only 1.8% of the US population (i.e., respondents who identified as Black or African American in combination with another race group in the 2020 census [89]). Although race/ethnicity are less reliably reported by Hispanics (mostly ≥ 80% accuracy), Asians (mostly ≥75%), Native Americans (mostly≤56%), and Hawaiian/Pacific Islanders (30% and 38%) [90], these do not affect eGFR cr .…”

Section: Self-reported Race Is Poorly Definedmentioning

confidence: 88%

Retaining Race in Chronic Kidney Disease Diagnosis and Treatment

Williams

2023

Cureus

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The best overall measure of kidney function is glomerular filtration rate (GFR) as commonly estimated from serum creatinine concentrations (eGFR cr ) using formulas that correct for the higher average creatinine concentrations in Blacks. After two decades of use, these formulas have come under scrutiny for estimating GFR differently in Blacks and non-Blacks. Discussions of whether to include race (Black vs. non-Black) in the calculation of eGFR cr fail to acknowledge that the original race-based eGFR cr provided the same CKD treatment recommendations for Blacks and non-Blacks based on directly (exogenously) measured GFR. Nevertheless, the National Kidney Foundation and the American Society of Nephrology Task Force on Reassessing the Inclusion of Race in Diagnosing Kidney Disease removed race in CKD treatment guidelines and pushed for the immediate adoption of a race-free eGFR cr formula by physicians and clinical laboratories. This formula is projected to negate CKD in 5.51 million White and other non-Black adults and reclassify CKD to less severe stages in another 4.59 million non-Blacks, in order to expand treatment eligibility to 434,000 Blacks not previously diagnosed and to 584,000 Blacks previously diagnosed with less severe CKD. This review examines: 1) the validity of the arguments for removing the original race correction, and 2) the performance of the proposed replacement formula. Excluding race in the derivation of eGFR cr changed the statistical bias from +3.7 to -3.6 ml/min/1.73m 2 in Blacks and from +0.5 to +3.9 in non-Blacks, i.e., promoting CKD diagnosis in Blacks at the cost of restricting diagnosis in non-Blacks. By doing so, the revised eGFR cr greatly exaggerates the purported racial disparity in CKD burden. Claims that the revised formulas identify heretofore undiagnosed CKD in Blacks are not supported when studies that used kidney failure replacement therapy and mortality are interpreted as proxies for baseline CKD. Alternatively, a race-stratified eGFR cr (i.e., separate equations for Blacks and non-Blacks) would provide the least biased eGFR cr for both Blacks and non-Blacks and the best medical treatment for all patients.

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“…Historically, there has been a lack of consistency and accuracy regarding race and ethnicity data in the U.S. healthcare system. 36 Addressing health disparities requires detail and accurate demographic data. We believe that priority should be given to improve self-reported data by implementing intentional policies, procedures, and training in place to ensure accurate collection standards.…”

Section: Discussionmentioning

confidence: 99%

Limited English Proficiency Is Associated With Diabetic Retinopathy in Patients Presenting for Cataract Surgery

Gill,

Marin,

Caldwell

et al. 2023

Trans. Vis. Sci. Tech.

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Purpose To investigate the relationship between limited English proficiency (LEP) and diabetic retinopathy (DR) in patients presenting for cataract surgery. Methods This is a retrospective observational study of patients who underwent cataract surgery between January 2014 and February 2020. Patients who self-identified as needing or preferring an interpreter were defined as having LEP. Differences in demographics, characteristics, and outcomes including history of type 2 diabetes (T2DM), DR, preoperative best corrected visual acuity (BCVA), macular edema, and anti-vascular endothelial growth factor injections were analyzed. Statistical comparisons were assessed using logistic regression with generalized estimating equations. Results We included 13,590 eyes. Of these, 868 (6.4%) were from LEP patients. Patients with LEP were more likely to be Hispanic ( P < 0.001), female sex ( P = 0.008), or older age ( P = 0.003) and have worse mean BCVA at presentation ( P < 0.001). Patients with LEP had a significantly higher rate of T2DM ( P < 0.001), macular edema ( P = 0.033), and DR (18.1% vs. 5.8%, P < 0.001). Findings remained significant when controlling for age, sex, race/ethnicity, and type of health insurance. Patients with LEP and DR were more likely to have had later stages of DR ( P = 0.023). Conclusions Patients with LEP presenting for cataract surgery had a higher rate of DR and associated complications compared to patients with English proficiency. Further studies are needed to understand how language disparities influence health and what measures could be taken to improve healthcare in this vulnerable population Translational Relevance Our study highlights healthcare disparities within ophthalmology and emphasizes the importance of advocating for improved healthcare delivery for patients with LEP.

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The accuracy of race & ethnicity data in US based healthcare databases: A systematic review

Cited by 15 publications

References 47 publications

A Customized Human Mitochondrial DNA Database (hMITO DB v1.0) for Rapid Sequence Analysis, Haplotyping and Geo-Mapping

A Customized Human Mitochondrial DNA Database (hMITO DB v1.0) for Rapid Sequence Analysis, Haplotyping and Geo-Mapping

Retaining Race in Chronic Kidney Disease Diagnosis and Treatment

Limited English Proficiency Is Associated With Diabetic Retinopathy in Patients Presenting for Cataract Surgery

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