Skip to main content
SpringerLink
Log in

Accuracy of patient race and ethnicity data in a central cancer registry

  • Original Paper
  • Published:
Cancer Causes & Control Aims and scope Submit manuscript

Abstract

Purpose

Race and Hispanic ethnicity data can be challenging for central cancer registries to collect. We evaluated the accuracy of the race and Hispanic ethnicity variables collected by the Utah Cancer Registry compared to self-report.

Methods

Participants were 3,162 cancer survivors who completed questionnaires administered in 2015–2022 by the Utah Cancer Registry. Each survey included separate questions collecting race and Hispanic ethnicity, respectively. Registry-collected race and Hispanic ethnicity were compared to self-reported values for the same individuals. We calculated sensitivity and specificity for each race category and Hispanic ethnicity separately.

Results

Survey participants included 323 (10.2%) survivors identifying as Hispanic, a lower proportion Hispanic than the 12.1% in the registry Hispanic variable (sensitivity 88.2%, specificity 96.5%). For race, 43 participants (1.4%) self-identified as American Indian or Alaska Native (AIAN), 32 (1.0%) as Asian, 23 (0.7%) as Black or African American, 16 (0.5%) Pacific Islander (PI), and 2994 (94.7%) as White. The registry race variable classified a smaller proportion of survivors as members of each of these race groups except White. Sensitivity for classification of race as AIAN was 9.3%, Asian 40.6%, Black 60.9%, PI 25.0%, and specificity for each of these groups was > 99%. Sensitivity and specificity for White were 98.8% and 47.4%.

Conclusion

Cancer registry race and Hispanic ethnicity data often did not match the individual’s self-identification. Of particular concern is the high proportion of AIAN individuals whose race is misclassified. Continued attention should be directed to the accurate capture of race and ethnicity data by hospitals.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Data availability

The datasets generated during and/or analyzed during the current study are not publicly available due to privacy restrictions.

References

  1. Cronin KA, Scott S, Firth AU, Sung H, Henley SJ, Sherman RL et al (2022) Annual report to the nation on the status of cancer, part 1: National cancer statistics. Cancer 128(24):4251–4284. https://doi.org/10.1002/cncr.34479

    Article  PubMed  Google Scholar 

  2. NIH National Cancer Institute (2022) Cancer. https://www.cancer.gov/about-cancer/understanding/disparities. Accessed 30 May 2023

  3. Siegel RL, Miller KD, Fuchs HE, Jemal A (2022) Cancer statistics, 2022. CA 72(1):7–33. https://doi.org/10.3322/caac.21708

    Article  PubMed  Google Scholar 

  4. Thornton M (2022) Standards for Cancer Registries Volume II, Data Standards and Data Dictionary. North American Association of Central Cancer Registries

  5. Lin SS, Kelsey JL (2000) Use of race and ethnicity in epidemiologic research: concepts, methodological issues, and suggestions for research. Epidemiol Rev 22(2):187–202. https://doi.org/10.1093/oxfordjournals.epirev.a018032

    Article  CAS  PubMed  Google Scholar 

  6. Layne TM, Ferrucci LM, Jones BA, Smith T, Gonsalves L, Cartmel B (2019) Concordance of cancer registry and self-reported race, ethnicity, and cancer type: a report from the American Cancer Society’s studies of cancer survivors. Cancer Causes Control 30(1):21–29. https://doi.org/10.1007/s10552-018-1091-3

    Article  PubMed  Google Scholar 

  7. Altekruse SF, Cosgrove C, Cronin K, Yu M (2017) Comparing cancer registry abstracted and self-reported data on race and ethnicity. J Registry Manag 44(1):30–33

    Google Scholar 

  8. Clegg LX, Reichman ME, Hankey BF, Miller BA, Lin YD, Johnson NJ et al (2007) Quality of race, Hispanic ethnicity, and immigrant status in population-based cancer registry data: implications for health disparity studies. Cancer Causes Control 18(2):177–187. https://doi.org/10.1007/s10552-006-0089-4

    Article  PubMed  Google Scholar 

  9. Jensen E, Jones N, Rabe M, Pratt B, Medina L, Orozco K, et al. (2021) The Chance That Two People Chosen at Random Are of Different Race or Ethnicity Groups Has Increased Since 2010. United States Census Bureau. https://www.census.gov/library/stories/2021/08/2020-united-states-population-more-racially-ethnically-diverse-than-2010.html. Accessed 30 May 2023

  10. Jones N, Bullock J. (2013) Understanding Who Reported Multiple Races in the U.S. Decennial Census: Results From Census 2000 and the 2010 Census. Family Relations 62 1:5–16. https://www.jstor.org/stable/23326022

  11. Gomez SL, Glaser SL, Horn-Ross PL, Cheng I, Quach T, Clarke CA et al (2014) Cancer research in Asian American, Native Hawaiian, and Pacific Islander populations: accelerating cancer knowledge by acknowledging and leveraging heterogeneity. Cancer Epidemiol Biomark Prev 23(11):2202–2205. https://doi.org/10.1158/1055-9965.Epi-14-0624

    Article  Google Scholar 

  12. Miller BA, Chu KC, Hankey BF, Ries LA (2008) Cancer incidence and mortality patterns among specific Asian and Pacific Islander populations in the U.S. Cancer Causes Control 19(3):227–256. https://doi.org/10.1007/s10552-007-9088-3

    Article  PubMed  Google Scholar 

  13. Liu L, Tanjasiri SP, Cockburn M (2011) Challenges in identifying Native Hawaiians and Pacific Islanders in population-based cancer registries in the U.S. J Immigrant Minority Health 13(5):860–866. https://doi.org/10.1007/s10903-010-9381-1

    Article  Google Scholar 

  14. Gomez SL, Glaser SL (2006) Misclassification of race/ethnicity in a population-based cancer registry (United States). Cancer Causes Control 17(6):771–781. https://doi.org/10.1007/s10552-006-0013-y

    Article  PubMed  Google Scholar 

  15. Stewart SL, Swallen KC, Glaser SL, Horn-Ross PL, West DW (1999) Comparison of methods for classifying Hispanic ethnicity in a population-based cancer registry. Am J Epidemiol 149(11):1063–1071. https://doi.org/10.1093/oxfordjournals.aje.a009752

    Article  CAS  PubMed  Google Scholar 

  16. Sweeney C, Edwards SL, Baumgartner KB, Herrick JS, Palmer LE, Murtaugh MA et al (2007) Recruiting Hispanic women for a population-based study: validity of surname search and characteristics of nonparticipants. Am J Epidemiol 166(10):1210–1219. https://doi.org/10.1093/aje/kwm192

    Article  PubMed  Google Scholar 

  17. Hamilton AS, Hofer TP, Hawley ST, Morrell D, Leventhal M, Deapen D et al (2009) Latinas and breast cancer outcomes: population-based sampling, ethnic identity, and acculturation assessment. Cancer Epidemiol Biomark Prev 18(7):2022–2029. https://doi.org/10.1158/1055-9965.Epi-09-0238

    Article  Google Scholar 

  18. Silva A, Rauscher GH, Ferrans CE, Hoskins K, Rao R (2014) Assessing the quality of race/ethnicity, tumor, and breast cancer treatment information in a non-SEER state registry. J Registry Manag 41(1):24–30

    PubMed  Google Scholar 

  19. Clarke LC, Rull RP, Ayanian JZ, Boer R, Deapen D, West DW et al (2016) Validity of race, ethnicity, and national origin in population-based cancer registries and rapid case ascertainment enhanced with a Spanish surname list. Med Care 54(1):e1-8. https://doi.org/10.1097/MLR.0b013e3182a30350

    Article  PubMed  PubMed Central  Google Scholar 

  20. Zingmond DS, Parikh P, Louie R, Lichtensztajn DY, Ponce N, Hasnain-Wynia R et al (2015) Improving hospital reporting of patient race and ethnicity-approaches to data auditing. Health Serv Res 50(Suppl 1):1372–1389. https://doi.org/10.1111/1475-6773.12324

    Article  PubMed  PubMed Central  Google Scholar 

  21. America Counts Staff (2021) Utah Was Fastest-Growing State From 2010 to 2020. United States Census Bureau. https://www.census.gov/library/stories/state-by-state/utah-population-change-between-census-decade.html. Accessed 4 August 2022

  22. Millar M, Herget K, Codden R, Howlett C (2022) Cancer in Utah: Incidence and Mortality Statistics through 2019. Utah Cancer Registry, University of Utah. https://uofuhealth.utah.edu/documents/cancer-utah-2019.

  23. Hollingshaus M (2020) Utah State and County Annual Population Estimates by Single-Year of Age, Sex, and Race/Ethnicity: 2010–2019. Kem C. Gardner Policy Institute: The University of Utah. https://gardner.utah.edu/wp-content/uploads/PopEst-AgeSexRace-FS-Aug2020.pdf?x71849. Accessed 4 August 2022

  24. Utah Cancer Registry Certifications & Data Quality. University of Utah Health. https://uofuhealth.utah.edu/utah-cancer-registry/about/certifications-data-quality. Accessed 30 May 2023

  25. NAACCR Race and Ethnicity Work Group (2011) NAACCR Guildeline for Enhancing Hispanic/Latino Identification: Revised NAACCR Hispanic/Latino Identification Algorithm [NHIA v2.2.1]. North American Association of Central Cancer Registries.

  26. NAACCR Race and Ethnicity Work Group (2011) NAACCR Asian/Pacific Islander Identification Algorithm [NAPIIA v1.2.1]: Enhancing the Specificity of Identification. North American Associatin of Central Cancer Registries.

  27. Soisson S, Ganz PA, Gaffney D, Rowe K, Snyder J, Wan Y et al (2018) Long-term cardiovascular outcomes among endometrial cancer survivors in a large, population-based cohort study. J Natl Cancer Inst 110(12):1342–1351. https://doi.org/10.1016/j.ygyno.2017.12.025

    Article  PubMed  PubMed Central  Google Scholar 

  28. Millar MM, Herget KA, Ofori-Atta B, Codden RR, Edwards SL, Carter ME et al (2023) Cancer survivorship experiences in Utah: an evaluation assessing indicators of survivors’ quality of life, health behaviors, and access to health services. Cancer Causes Control 34(4):337–347. https://doi.org/10.1007/s10552-023-01671-5

    Article  PubMed  Google Scholar 

  29. Millar MM, Elena JW, Gallicchio L, Edwards SL, Carter ME, Herget KA et al (2019) The feasibility of web surveys for obtaining patient-reported outcomes from cancer survivors: a randomized experiment comparing survey modes and brochure enclosures. BMC Med Res Methodol 19(1):208. https://doi.org/10.1186/s12874-019-0859-9

    Article  PubMed  PubMed Central  Google Scholar 

  30. McCarty R, Trabert B, Millar M, Haaland B, Grieshober L, Barnard M et al (2023) Abstract 6471: Tattooing and risk of hematologic cancer: A population-based case-control study in Utah. Cancer Res. https://doi.org/10.1158/1538-7445.AM2023-6471

    Article  PubMed  Google Scholar 

  31. U.S. Department of Agriculture Economic Research Service (2020) Rural-Urban Continuum Codes. https://www.ers.usda.gov/data-products/rural-urban-continuum-codes/. Accessed 30 May 2023

  32. Parker K, Horowitz J, Morin R, Lopez M (2015) Chapter 7: The Many Dimensions of Hispanic Racial Identity. Multiracial in America. Pew Research Center. https://www.pewresearch.org/social-trends/2015/06/11/chapter-7-the-many-dimensions-of-hispanic-racial-identity/. Accessed 30 May 2023

  33. Kem C. Gardner Policy Institute. 2020 Census Redistricting Data. https://gardner.utah.edu/demographics/2020-census/redistricting-data. Accessed 30 May 2023.

  34. Gomez SL, Lichtensztajn DY, Parikh P, Hasnain-Wynia R, Ponce N, Zingmond D (2014) Hospital practices in the collection of patient race, ethnicity, and language data: a statewide survey, California, 2011. J Health Care Poor Underserved 25(3):1384–1396. https://doi.org/10.1353/hpu.2014.0126

    Article  PubMed  Google Scholar 

  35. Gomez SL, Satariano W, Le GM, Weeks P, McClure L, West DW (2009) Variability among hospitals and staff in collection of race, ethnicity, birthplace, and socioeconomic information in the greater San Francisco Bay Area. J Registry Manag 36(4):105–110

    PubMed  Google Scholar 

  36. Gomez SL, Le GM, West DW, Satariano WA, O’Connor L (2003) Hospital policy and practice regarding the collection of data on race, ethnicity, and birthplace. Am J Public Health 93(10):1685–1688. https://doi.org/10.2105/ajph.93.10.1685

    Article  PubMed  PubMed Central  Google Scholar 

  37. Blumenthal D, Tavenner M (2010) The “meaningful use” regulation for electronic health records. N Engl J Med 363(6):501–504. https://doi.org/10.1056/NEJMp1006114

    Article  CAS  PubMed  Google Scholar 

  38. Magaña López M, Bevans M, Wehrlen L, Yang L, Wallen GR (2016) Discrepancies in race and ethnicity documentation: a potential barrier in identifying racial and ethnic disparities. J Racial Ethn Health Disparities 4(5):812–818. https://doi.org/10.1007/s40615-016-0283-3

    Article  PubMed  PubMed Central  Google Scholar 

  39. Cook LA, Sachs J, Weiskopf NG (2021) The quality of social determinants data in the electronic health record: a systematic review. J Am Med Inform Assoc 29(1):187–196. https://doi.org/10.1093/jamia/ocab199

    Article  PubMed  PubMed Central  Google Scholar 

  40. Webster PS, Fulton JP, Sampangi S (2013) Conflicting race/ethnicity reports: lessons for improvement in data quality. J Registry Manag 40(3):122–126

    PubMed  Google Scholar 

  41. Webster PS, Sampangi S (2017) Did we have an impact? changes in racial and ethnic composition of patient populations following implementation of a pilot program. J Healthcare Qual 39(3):e22–e32. https://doi.org/10.1111/jhq.12079

    Article  Google Scholar 

  42. Gomez SL, Kelsey JL, Glaser SL, Lee MM, Sidney S (2005) Inconsistencies between self-reported ethnicity and ethnicity recorded in a health maintenance organization. Ann Epidemiol 15(1):71–79. https://doi.org/10.1016/j.annepidem.2004.03.002

    Article  PubMed  Google Scholar 

  43. Klinger EV, Carlini SV, Gonzalez I, Hubert SS, Linder JA, Rigotti NA et al (2015) Accuracy of race, ethnicity, and language preference in an electronic health record. J Gen Intern Med 30(6):719–723. https://doi.org/10.1007/s11606-014-3102-8

    Article  PubMed  Google Scholar 

  44. Flanagin A, Frey T, Christiansen SL (2021) Updated guidance on the reporting of race and ethnicity in medical and science journals. J Am Med Assoc 326(7):621–627. https://doi.org/10.1001/jama.2021.13304

    Article  Google Scholar 

  45. Management and Budget Office (2023) Initial Proposals For Updating OMB's Race and Ethnicity Statistical Standards. https://www.federalregister.gov/documents/2023/01/27/2023-01635/initial-proposals-for-updating-ombs-race-and-ethnicity-statistical-standards. Accessed 30 May 2023.

Download references

Acknowledgements

This project was supported by the U.S. Centers for Disease Control and Prevention’s National Program of Cancer Registries, Cooperative Agreement No. NU58DP007131. The Utah Cancer Registry is also supported by the U.S. National Cancer Institute's Surveillance, Epidemiology, and End Results Program, Contract No. HHSN261201800016I, with additional support from the University of Utah and Huntsman Cancer Foundation. This project was also supported in part by funding from the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002538. We thank Kate Hak, Lori Burke, Seth Otto, Allie Palmer, Julia Schaefer, Jenna Sawatzki, and Carlo Cardozo for their efforts to recruit participants and collect data for the studies included in this analysis.

Funding

This work was supported by the U.S. Centers for Disease Control and Prevention’s National Program of Cancer Registries, Cooperative Agreement No. NU58DP007131. The Utah Cancer Registry is also supported by the U.S. National Cancer Institute's SEER Program, Contract No. HHSN261201800016I, with additional support from the University of Utah and Huntsman Cancer Foundation. This project was also supported in part by funding from the National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant UL1TR002538.

Author information

Authors and Affiliations

  1. Division of Epidemiology, Department of Internal Medicine, University of Utah School of Medicine, Salt Lake City, UT, USA

    Rachel R. Codden, Carol Sweeney, Blessing S. Ofori-Atta & Morgan M. Millar

  2. Utah Cancer Registry, University of Utah, Salt Lake City, UT, USA

    Rachel R. Codden, Carol Sweeney, Kimberly A. Herget, Kacey Wigren, Marjorie E. Carter, Mia Hashibe, Jennifer A. Doherty & Morgan M. Millar

  3. Huntsman Cancer Institute, University of Utah, Salt Lake City, UT, USA

    Carol Sweeney, Rachel D. McCarty, Mia Hashibe, Jennifer A. Doherty & Morgan M. Millar

  4. Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT, USA

    Sandra Edwards

  5. Department of Family and Preventive Medicine, University of Utah School of Medicine, Salt Lake City, UT, USA

    Mia Hashibe

  6. Department of Population Health Sciences, University of Utah School of Medicine, Salt Lake City, UT, USA

    Rachel D. McCarty & Jennifer A. Doherty

Authors
  1. Rachel R. Codden
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Carol Sweeney
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Blessing S. Ofori-Atta
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Kimberly A. Herget
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Kacey Wigren
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Sandra Edwards
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Marjorie E. Carter
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Rachel D. McCarty
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Mia Hashibe
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. Jennifer A. Doherty
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. Morgan M. Millar
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

R.R.C., M.M.M., C.S., M.E.C., and K.A.H. contributed to the study conception and design. M.M.M., J.A.D., R.D.M., and M.H. contributed to data acquisition. S.E. and M.E.C. oversaw material preparation and data collection. Analyses were performed by B.S.O.-A., K.A.H., and R.R.C. The first draft of the manuscript was written by R.R.C. K.W. revised the draft critically for important intellectual content. M.M.M. and C.S. assisted in substantive revisions to the drafted manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Morgan M. Millar.

Ethics declarations

Competing interests

The authors have no relevant financial or non-financial interests to disclose.

Ethical approval

The Utah Cancer Survivors Study (Study 1 in this analysis) was approved by the University of Utah Institutional Review Board (IRB no. 00065816). The University of Utah Institutional Review Board reviewed and granted exemption to the SEER Program Rapid Response Surveillance System study (Study 2, IRB no. 00096345) and the Malignancy Health and Lifestyle Study (Study 4, IRB no. 00127902). The Cancer Survivor Experiences Survey (Study 3) was reviewed by the Utah Department of Health and Human Services Institutional Review Board, which deemed the project exempt from human subjects research approval because it is a program evaluation initiative.

Consent to participate

Informed consent was obtained from all participants included in this study.

Consent to publish

Not applicable. This manuscript does not present individual data.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 19 kb)

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Codden, R.R., Sweeney, C., Ofori-Atta, B.S. et al. Accuracy of patient race and ethnicity data in a central cancer registry. Cancer Causes Control 35, 685–694 (2024). https://doi.org/10.1007/s10552-023-01827-3

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10552-023-01827-3

Keywords

Search

Navigation