Discrepancies in race and ethnicity documentation: a potential barrier in identifying racial and ethnic disparities
Open accessAbstract
BACKGROUND: Data collection on race and ethnicity is critical in the assessment of racial disparities related to health. Studies comparing clinical and administrative data show discrepancies in race documentation and attribution. METHODS: Self-reported data from two studies were compared to demographics in the electronic health record (EHR) extracted from the Biomedical Translational Research Information System (BTRIS) repository. McNemar and Bhapkar analyses were conducted to quantify the agreement of ethnicity and race between self-reported and EHR data. Pearson's chi-square tests were used to explore the relationship between acculturation, length of time in the USA, country of residence, and how individuals self-reported their race. RESULTS: The sample (n = 280) was predominantly female (52.1 %), with a mean age of 47 (SD ± 13.74), mean years in the USA were 12.8 (SD ± 11.67) and the majority were born outside of the USA. (55.6 %). Those who self-identified as Hispanic (n = 208) scored a mean of 5.5 (SD ± 3.07) on the short acculturation scale (SAS) that ranges 4 to 20; lower scores indicate less acculturation. A significant difference was found between the way race is reported in the electronic medical record and self-reported data among those people who identified as Hispanic, with significant differences in the white (p < 0.0001) and other (p < 0.0001) categories. CONCLUSIONS: The misclassification of race is most frequent in those individuals who self-identified as Hispanic. As the Hispanic population in the USA continues to grow, understanding the factors that affect the way that individuals from this heterogeneous population self-report race may provide important guidance in tailoring care to address health disparities.
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Misclassification bias was noted as a problem or potential problem in 18 of the 26 (69%) articles about the plausibility of race/ethnicity data.
“Misclassification bias, that is, incorrect assignment, was noted as a problem or a potential problem in 18 of the 26 (69%) articles about the plausibility of race/ethnicity data.11,13,23–38”
From The quality of social determinants data in the electronic health record: a systematic review (2021) · cites this paper as [11]
The Introduction (page unavailable) describes incorrect race and ethnicity data and discrepancies between self-reports and records, supporting the general concern about misclassification. Neither it nor the Discussion (page unavailable) reports a review of 26 articles or the figure of 18 articles (69%); that numerical claim is unsupported by this source. (LLM, conf=0.85)
Experimental — accuracy not yet measuredThirteen studies speculated that poor data quality for Hispanic patients may be due to the fluid, debatable, and problematic nature of the definition of race and ethnicity.
“Thirteen studies speculated that this may be due to the “fluid, debatable, and problematic”34 nature of the definition of race and ethnicity.11,22,24–26,34,37,40,41,45,46,80,81”
From The quality of social determinants data in the electronic health record: a systematic review (2021) · cites this paper as [11]
The Introduction describes racial and ethnic identification as fluid, and the Discussion links Hispanic/Latino reporting inconsistencies to difficulty fitting existing race and ethnicity categories. The paper does not use the quoted phrase “fluid, debatable, and problematic,” so it supports the explanation but not the quotation attributed to it. The count of thirteen studies is the citing authors’ aggregation, not a finding attributed to this individual source. (LLM, conf=0.82)
Experimental — accuracy not yet measuredFourteen studies reported that Hispanic patients were more likely to be misclassified, either that information about their ethnicity was missing or they had been mistakenly grouped into the "Other" category.
“Fourteen studies reported that Hispanic patients were more likely to be misclassified, either that information about their ethnicity was missing or they had been mistakenly grouped into the “Other” category.11,23–25,29,30,32,33,36–41”
From The quality of social determinants data in the electronic health record: a systematic review (2021) · cites this paper as [11]
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Martino, S. C., Elliott, M. N., Haas, A., Peltz, A., Saliba, D., Hassan, S., Rothenberg, E., Keshawarz, A., Rushkin, M., Gildner, J., et al. (2024) · Journal of The American Geriatrics Society · doi:10.1111/jgs.18889 · Cited by 6
Teeple, S., Chivers, C., Linn, K. A., Halpern, S. D., Eneanya, N. D., Draugelis, M. E., & Courtright, K. R. (2023) · BMJ Quality & Safety · doi:10.1136/bmjqs-2022-015173 · Cited by 7 · see citing works
Nagy, G. A., Cassiello-Robbins, C. F., Anand, D., Arnold, M. L., Coleman, J. N., Nwosu, J., Singh, R. S., & Woodward, E. N. (2022) · Transcultural Psychiatry · doi:10.1177/13634615221105117 · Cited by 6 · see citing works
Pirtle, W. N. L., Valdez, Z., Daniels, K. P., Dueñas, M. D., & Castro, D. (2020) · Ethnicity & Disease · doi:10.18865/ed.30.3.489 · Cited by 6 · see citing works
Agreement of Electronic Health Record-Documented Race and Ethnicity with Parental Report
Goyal, M., Alpern, E. R., Webb, M., Brousseau, D. C., Chamberlain, J. M., Zorc, J., Frey, T., Wiersma, A., Barney, B. J., & Drendel, A. (2023) · Academic Emergency Medicine · doi:10.1111/acem.14840 · Cited by 5 · see citing works
“3,5 However, these studies, too, found lower rates of agreement in minoritized populations compared to White pa - tients.”
ResultAssociation between country of birth and gastric intestinal metaplasia: a retrospective cohort study
Haghighat, S., Blandon, C., Goldberg, D. S., & Kumar, S. (2023) · The Lancet Regional Health - Americas · doi:10.1016/j.lana.2023.100635 · Cited by 4 · see citing works
Kelton, K. F., Young, J. R., Evans, M. K., Eshera, Y. M., Blakey, S. M., Mann, A. J., Pugh, M. J., Calhoun, P. S., Beckham, J. C., & Kimbrel, N. A. (2022) · Complementary Therapies in Clinical Practice · doi:10.1016/j.ctcp.2022.101644 · Cited by 11 · see citing works
Avendano, E. E., Blackmon, S., Nirmala, N., Chan, C. W., Morin, R. A., Balaji, S., McNulty, L., Argaw, S., Doron, S., & Nadimpalli, M. (2024) · medRxiv · doi:10.1101/2024.04.24.24306289 · Cited by 4 · see citing works
“Given well-known discrepancies between the race or ethnicity that an individual might identify with and what hospital staff note in the medical record, especially in the USA, 70 this information is critical for evaluating the validity of a study's findings.”
InfluentialFungal Infections and Social Determinants of Health: Using Data to Identify Disparities
Williams, S. L., Benedict, K., & Toda, M. (2024) · Current Fungal Infection Reports · doi:10.1007/s12281-024-00494-4 · Cited by 4 · see citing works
“Finally, race and ethnicity categorizations may contribute to measurement error if patients or survey respondents do not identify with any of the listed groups or do not report race or ethnicity, which disproportionately affects certain groups [18, 19].”
Accuracy of patient race and ethnicity data in a central cancer registry
Codden, R. R., Sweeney, C., Ofori-Atta, B. S., Herget, K. A., Wigren, K., Edwards, S. L., Carter, M. E., McCarty, R., Hashibe, M., Doherty, J. A., et al. (2023) · Cancer Causes & Control · doi:10.1007/s10552-023-01827-3 · Cited by 5 · see citing works
“There are many valid critiques of the measurement of race and ethnicity in healthcare and research [38–42].”
McConnell, K. H., Hajat, A., Sack, C. S., Mooney, S. J., & Khosropour, C. M. (2023) · AJPM Focus · doi:10.1016/j.focus.2023.100120 · Cited by 4 · see citing works
“60,61 Furthermore, race and ethnicity data recorded in EHR systems may not be valid, especially for POC, 62,63 leading to differential exposure mis-classi fi cation.”
Jacobs, J., Johnson, A., Boshara, A. I., Hunt, B. R., Khouri, C., Cruz, J., & Glick, N. (2021) · PLoS ONE · doi:10.1371/journal.pone.0258243 · Cited by 4
Rosa-Lebron, R., Limburg, A., Carey, T. S., Udalova, V., & Entwisle, B. (2025) · Journal of Racial and Ethnic Health Disparities · doi:10.1007/s40615-025-02435-4 · Cited by 3 · see citing works
“Racial and ethnic identities are fluid, specific to place, time, and context which may lead people to change the racial and ethnic group with which they identify [33, 60].”
Contextualized race and ethnicity annotations for clinical text from MIMIC-III
Walk, O. J. B. D., Pichon, A., Nieva, H. R., Sun, T., Li, J., Joseph, J., Kinberg, S., Richter, L. R., Crusco, S., Kulas, K., et al. (2024) · Scientific Data · doi:10.1038/s41597-024-04183-2 · Cited by 3 · see citing works
Wickersham, A., Das-Munshi, J., Ford, T., Jewell, A., Stewart, R., & Downs, J. (2024) · BMJ Open · doi:10.1136/bmjopen-2023-078788 · Cited by 3
Vaid, E., & Wadsworth, M. E. (2023) · The Journal of Early Adolescence · doi:10.1177/02724316231212561 · Cited by 3 · see citing works
Erickson, S., Bokota, R., Doroshenko, C., Lewandowski, K., Osei, K., Flannery, K., & Dominguez, A. E. (2023) · Public health reports (1974) · doi:10.1177/00333549231154577 · Cited by 3 · see citing works
Avendano, E. E., Blackmon, S., Nirmala, N., Chan, C. W., Morin, R. A., Balaji, S., McNulty, L., Argaw, S., Doron, S., & Nadimpalli, M. (2025) · BMJ Global Health · doi:10.1136/bmjgh-2024-017404 · Cited by 2 · see citing works
“Funders had no role in study design; in the collection, analysis or interpretation of data; or in writing the manuscript.”
McAdam, J., Richard, S., Olsen, C., Byrne, C., Clausen, S., Michel, A., Agan, B., O'Connell, R. J., Burgess, T. H., Tribble, D., et al. (2025) · Journal of Racial and Ethnic Health Disparities · doi:10.1007/s40615-025-02351-7 · Cited by 2
“…among or within Medicare and Medicaid beneficiaries [33–36], patients served by community health centers or other medical centers [37–40], cancer survivors [41], cancer registries [42, 43], veterans and the Department of Veterans Affairs (VA) [44–49], and other databases and repositories [50–52].”
Johnson, A. M., Chan, H.-K., Johnson, R., Papin, A. S., Walter, D. C., Mann, N., Fisher, B., Myaskovsky, L., & Huebinger, R. (2025) · Prehospital Emergency Care · doi:10.1080/10903127.2025.2473684 · Cited by 2 · see citing works
“Our analysis relies on EMS reporting and documentation, which can be biased by recall bias and data entry errors (30).”
Kahouadji, N. (2024) · arXiv.org · doi:10.48550/arxiv.2402.15005 · Cited by 2
“On one hand, the type of collected data have been shown to suffer, at varying degrees, from challenges and limitations as illustrated for randomized controlled trials [14, 15, 16], electronic health records [17, 18, 19], and administrative health records [20, 21].”
BackgroundXie, Y., Liu, Y., Qin, Y., Chen, X., & Xie, Q. (2023) · International Journal of Rheumatic Diseases · doi:10.1111/1756-185x.14944 · Cited by 2 · see citing works
Ng, B., Camacho, Á., Parra, K., de la Espriella, R. A., Rico, V., Lozano, S., Troncoso, M., Castilla-Puentes, R., Cook, B., & Jimenez, D. E. (2018) · Ethnicity and Health · doi:10.1080/13557858.2018.1439894 · Cited by 2 · see citing works
“Prior research has demonstrated that country of residence may affect the way an individual self-selects their race and ethnicity (Lopez et al. 2017).”
BackgroundDisparities in Admissions for RSV
Coughlin, C. G., Monuteaux, M. C., Zhang, Z., Adelman, R. M., Hauptman, M., Neuman, M. I., & Horwitz, B. H. (2026) · Pediatric Emergency Care · doi:10.1097/pec.0000000000003613
Ouyang, D., Limburg, A., Rehkopf, D. H., Goldin, J. S., Phillips, R. L., Udalova, V., & Ho, D. E. (2026) · PLOS Digital Health · doi:10.1371/journal.pdig.0001289 · Cited by 1 · see citing works
Hong, J. S., Ma, X.-Y., Davis, W., Hwang, P., Khedr, S., Pham, V., Patrón, R., Foglia, C. M., Heffernan, D. S., & Chao, S. Y. (2025) · American Journal of Surgery · doi:10.1016/j.amjsurg.2025.116776 · Cited by 1 · see citing works
Richardson, J. D., Kline, H., Ko, B. Y., Hooper, A., Komanapalli, S. A., Alvarez-Del-Pino, J. D., & Yeh, E. S. (2024) · Medical Science Educator · doi:10.1007/s40670-024-02099-5 · Cited by 1 · see citing works
Enhanced Identification of Hispanic Ethnicity Using Clinical Data
Ochoa‐Allemant, P., Tate, J. P., Williams, E. C., Gordon, K. S., Marconi, V. C., Bensley, K. M., Rentsch, C. T., Wang, K., Taddei, T. H., Justice, A. C., et al. (2023) · Medical Care · doi:10.1097/mlr.0000000000001824 · Cited by 3 · see citing works
Wickersham, A., Das-Munshi, J., Ford, T., Stewart, R., & Downs, J. (2022) · medRxiv · doi:10.1101/2022.08.01.22278265 · Cited by 1
“Previous research from the United States of America and United Kingdom has repeatedly raised concerns over the completeness and consistency of ethnicity variables in routinely collected health data, particularly in comparison to self-reported survey data (9-12).”
ResultDisparities in Elevated Body Mass Index in Youth Receiving Care at Community Health Centers
Mohanty, N., Padilla, R., Leo, M., Tilmon, S., Akhabue, E., Rittner, S., Crawford, P., Okihiro, M., & Persell, S. D. (2021) · Family & Community Health · doi:10.1097/fch.0000000000000307 · Cited by 1
Mortgage Lender Misclassification of Applicant Race and Ethnicity: Evidence from HMDA DataPreprint
Dobre, A., & Witzen, B. (2023) · Social Science Research Network · doi:10.2139/ssrn.4636883 · Cited by 1 · see citing works
Cohen, C. C., Dick, A. W., Estrada, L. V., & Stone, P. W. (2026) · Medical Care · doi:10.1097/mlr.0000000000002339 · Cited by 1 · see citing works
Barcroft, M., Davis, B. A., Bapat, R., Cosgrove, T., & Napolitano, S. K. (2026) · Journal of Perinatology · doi:10.1038/s41372-026-02676-z
Lee, S. S., Gold, H., Ðoàn, L. N., Kwon, S., & Pothuri, B. (2026) · Gynecologic Oncology Reports · doi:10.1016/j.gore.2026.102106
Chen, J. L., Lavinsky, F., Lee, T.-F., Zambrano, R., & Schuman, J. (2025) · Ophthalmology Glaucoma · doi:10.1016/j.ogla.2025.12.007
LeBeau, K., Lopez, J., Orejuela, M., Eliazar-Macke, N. D., & Freytes, I. (2025) · Ethnicity and Health · doi:10.1080/13557858.2025.2486413
“…concepts of race and ethnicity, combining race and ethnicity into a single measure despite being complex constructs whose measurement can have implications for how racial and ethnic health inequities are addressed (Flanagin, Frey, and Christiansen 2021; Magaña López et al. 2016; Wong et al. 2021).”
Navigating Diversity: Optimizing Data Collection for Cardiovascular Health
Shah, K., & Makaryus, A. N. (2024) · The American Journal of Medicine · doi:10.1016/j.amjmed.2024.07.016
Yiu, A. J., Stephenson, G. S., Chow, E., & O’Connell, R. (2025) · Applied Clinical Informatics · doi:10.1055/a-2441-3677 · Cited by 3 · see citing works
Disparities in Visual Field Testing Frequency Among Subjects With Glaucoma
Madu, C. T., Lee, T.-F., Sohn, A., Hu, J.-Y., Matayev, R., Paranjpe, V., Fam, J., Wronka, A., Kim, E., Zambrano, R., et al. (2024) · Translational Vision Science & Technology · doi:10.1167/tvst.13.4.2
“27–29 In conclusion, our study demonstrates that Black and Asian subjects with glaucoma received a lower frequency of VFT per visit than White subjects after controlling for potential confounders.”
BackgroundManaging patients with sex-, race-, or ethnicity-based cardiovascular health inequities
Luntz, A. P., Creary, K., & Bruessow, D. (2023) · JAAPA : official journal of the American Academy of Physician Assistants · doi:10.1097/01.jaa.0000937264.73482.83
Cigarroa, F. (2021) · Journal of the American College of Surgeons · doi:10.1016/j.jamcollsurg.2020.12.033
The Use of Racial and Ethnic Terms
Benavides, G., & Gallo, O. (2019) · JAMA Facial Plastic Surgery · doi:10.1001/jamafacial.2019.0128
- Authors
- Magaña López, M., Bevans, M., Wehrlen, L., Yang, L., & Wallen, G. R.
- Affiliations
- National Institutes of Health (US)
- Corresponding author
- Wallen, G. R.
- Venue
- Journal of Racial and Ethnic Health Disparities
- Published
- 2016-09-08
- Volume
- 4
- Issue
- 5
- Pages
- 812-818
- ISSN
- 2196-8837 (ISSN-L)
- 2197-3792
- PMC
- PMC5342943
- OpenAlex
- W2509529148
- Cited by
- 101
- References
- 27
- Citations by year
- 2026: 5 · 2025: 12 · 2024: 17 · 2023: 27 · 2022: 19 · 2021: 9 · 2020: 6 · 2019: 2 · 2018: 3 · 2016: 1
- FWCI
- 3.41
- Type
- journal article
- Language
- en
- Open access
- hybrid
- doi.org
- Locations
- Journal of Racial and Ethnic Health Disparities (publishedVersion, cc-by)
- Europe PMC (PubMed Central) (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Funders
- All funding for this study was provided by the National Institutes of Health Clinical Center Intramural Research Program.
- Topics
- Health Sciences › Health Professions › Health Information Management › Medical Coding and Health Information
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Race, Genetics, and Society
- Social Sciences › Sociology and Political Science › Racial and Ethnic Identity Research
- Keywords
- racial misclassification, self-reported race, electronic health records, Hispanic population, acculturation, racial disparities, health disparities, data discrepancies
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