Discrepancies in Race and Ethnicity in the Electronic Health Record Compared to Self-report

Samalik, Joann; Goldberg, Caren S.; Modi, Zubin; Fredericks, Emily M.; Gadepalli, Samir K.; Eder, Sally J.; Adler, Jeremy

doi:10.1007/s40615-022-01445-w

Cited by 25 publications

(11 citation statements)

References 28 publications

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“…Minority races and ethnicities are more likely to have discordance between EMR- and self-reported race and ethnicity, 33 , 34 although a recent study assessing this in pediatrics found reasonably high overall concordance (κ = 0.77). 33 Local patient demographics led to many racial and ethnic, linguistic, or religious groups being combined into groups designated other. This resulted in substantial heterogeneity within these groups and limited generalizability outside the larger sociodemographic groups we report herein.…”

Section: Discussionmentioning

confidence: 98%

“…Our study relied on documentation of race and ethnicity, language, and religion in the EMR, which may lead to exposure misclassifications if categories were entered inaccurately. Minority races and ethnicities are more likely to have discordance between EMR- and self-reported race and ethnicity, although a recent study assessing this in pediatrics found reasonably high overall concordance (κ = 0.77) . Local patient demographics led to many racial and ethnic, linguistic, or religious groups being combined into groups designated other.…”

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Racial and Ethnic Disparity in Approach for Pediatric Intensive Care Unit Research Participation

Mayer,

Brajcich,

Juste

et al. 2024

JAMA Netw Open

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ImportanceWhile disparities in consent rates for research have been reported in multiple adult and pediatric settings, limited data informing enrollment in pediatric intensive care unit (PICU) research are available. Acute care settings such as the PICU present unique challenges for study enrollment, given the highly stressful and emotional environment for caregivers and the time-sensitive nature of the studies.ObjectiveTo determine whether race and ethnicity, language, religion, and Social Deprivation Index (SDI) were associated with disparate approach and consent rates in PICU research.Design, Setting, and ParticipantsThis retrospective cohort study was performed at the Children’s Hospital of Philadelphia PICU between July 1, 2011, and December 31, 2021. Participants included patients eligible for studies requiring prospective consent. Data were analyzed from February 2 to July 26, 2022.ExposureExposures included race and ethnicity (Black, Hispanic, White, and other), language (Arabic, English, Spanish, and other), religion (Christian, Jewish, Muslim, none, and other), and SDI (composite of multiple socioeconomic indicators).Main Outcomes and MeasuresMultivariable regressions separately tested associations between the 4 exposures (race and ethnicity, language, religion, and SDI) and 3 outcomes (rates of approach among eligible patients, consent among eligible patients, and consent among those approached). The degree to which reduced rates of approach mediated the association between lower consent in Black children was also assessed.ResultsOf 3154 children included in the study (median age, 6 [IQR, 1.9-12.5] years; 1691 [53.6%] male), rates of approach and consent were lower for Black and Hispanic families and those of other races, speakers of Arabic and other languages, Muslim families, and those with worse SDI. Among children approached for research, lower consent odds persisted for those of Black race (unadjusted odds ratio [OR], 0.73 [95% CI, 0.55-0.97]; adjusted OR, 0.68 [95% CI, 0.49-0.93]) relative to White race. Mediation analysis revealed that 51.0% (95% CI, 11.8%-90.2%) of the reduced odds of consent for Black individuals was mediated by lower probability of approach.Conclusions and RelevanceIn this cohort study of consent rates for PICU research, multiple sociodemographic factors were associated with lower rates of consent, partly attributable to disparate rates of approach. These findings suggest opportunities for reducing disparities in PICU research participation.

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Section: Discussionmentioning

confidence: 98%

Section: Discussionmentioning

confidence: 99%

Racial and Ethnic Disparity in Approach for Pediatric Intensive Care Unit Research Participation

Mayer,

Brajcich,

Juste

et al. 2024

JAMA Netw Open

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“…This is encouraging for the scientific research community since any untoward events can be monitored and rectified before widespread use leads to uncontrollable cascades. However, research representation in sample subsets is far from equitable (Algahtani et al 2018;Samalik et al 2022;Smyth et al 2019). The thalidomide tragedy needs no revisiting (Kim and Scialli 2011) and with the availability of preprint sites, virtual conferences and other collaborative mediums that permit the rapid dissemination of research findings, having equitable representation amongst patient populations before drawing research conclusions is more feasible than before.…”

Section: A Accounting For Variations In Population Effectsmentioning

confidence: 99%

Poor Representation of Developing Countries in Editorial Boards of Leading Obstetrics and Gynaecology Journals

Rawat

Unnithan

et al. 2023

ABR

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Evidence suggests a limited contribution to the total research output in leading obstetrics and gynaecology journals by researchers from the developing world. Editorial bias, quality of scientific research produced and language barriers have been attributed as possible causes for this phenomenon. The aim of this study was to understand the prevalence of editorial board members based out of low and lower-middle income countries in leading journals in the field of obstetrics and gynaecology. The top 21 journals in the field of obstetrics and gynaecology were selected based on their impact factor, SCImago ranking and literature search. The composition of the editorial boards of these journals was studied based on World Bank Income Criteria to understand the representation status of researchers from low and lower-middle income countries. A total of 1315 board members make up the editorial composition of leading obstetrics and gynaecology journals. The majority of these editors belong to high-income countries ( n = 1148; 87.3%). Low ( n = 6; 0.45%) and lower-middle income ( n = 55; 4.18%) countries make up for a very minuscule proportion of editorial board members. Only a meagre 9 out of 21 journals have editorial board members from these countries (42.85%). Low and low-middle countries have poor representation in the editorial boards of leading obstetrics and gynaecology journals. Poor representation in research from these countries has grave consequences for a large proportion of the global population and multidisciplinary collaborative efforts must be taken to rapidly change this statistic with immediate effect.

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“…Limitations may exist when collecting these data retrospectively from an electronic health record due to inaccurate or missing data. 70 While there are no scientific definitions for race or ethnicity, the National Institutes of Health (NIH) has guidance on reporting for purposes of government-funded research. Categories are based on the Office of Management and Budget (OMB) Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity , which are also used for the US Census.…”

Section: Case 3: Words Mattermentioning

confidence: 99%

Ethnopsychopharmacology: Clinical and scientific writing pearls

Leung

2023

Mental Health Clinician

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The concept of ethnopsychopharmacology aims to predict or explain the pharmacologic response to psychiatric medications based on the influence of biologic and nonbiologic factors. Interactions involving these factors are complex and influence patient outcomes in health care. Pharmacists and other clinicians working in patient care environments, research, or medical education should engage in lifelong learning to enhance ethnopsychopharmacologic knowledge gaps, which ultimately may improve and individualize care across diverse populations. Through two cases, this paper provides pearls on how biogeographical ancestry and cytochrome P450 status may influence pharmacotherapy selection, dosing, or response. A third scenario highlights a publication, like many other published works, with deficiencies in how data on ancestry, race, and ethnicity are collected or reported. Current recommendations on the use of inclusive language in scientific writing are reviewed, with attention to specific examples.

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Discrepancies in Race and Ethnicity in the Electronic Health Record Compared to Self-report

Cited by 25 publications

References 28 publications

Racial and Ethnic Disparity in Approach for Pediatric Intensive Care Unit Research Participation

Racial and Ethnic Disparity in Approach for Pediatric Intensive Care Unit Research Participation

Poor Representation of Developing Countries in Editorial Boards of Leading Obstetrics and Gynaecology Journals

Ethnopsychopharmacology: Clinical and scientific writing pearls

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