Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement
Chapter 3: Defining Categorization Needs for Race and Ethnicity Data (continued)
Eliciting Responses on Race, Hispanic Ethnicity, and Granular Ethnicity
The ways in which entities inquire about an individual's race and ethnicity vary based on the setting in which the questions are asked. For example, paper survey forms use minimal words in questions and category descriptions to solicit race and ethnicity information from respondents. In contrast, surveys administered via an in-person interview can solicit more detailed information and explain the types of responses desired. Table 3-6 highlights ways in which race and ethnicity data are captured and illustrates how the questions may be tailored to specific contexts in health care.
Eliciting accurate and reliable race, Hispanic ethnicity, and granular ethnicity data depends on the ways in which the questions are asked, the instructions provided to respondents (e.g., "Select one or more"), and the format of the questions (i.e., one-question versus two-question format). As previously noted, this latter concern is especially relevant to accurately classifying individuals who self-identify as Hispanic. Ensuring that as many respondents as possible answer questions regarding their race and ethnicity will improve data quality. Pilot projects and further study can help determine the best ways to elicit accurate data that are useful for health care quality improvement and will guide current and future data collection systems.
Recommendation 3-3: To determine the utility for health and health care purposes, HHS should pursue studies on different ways of framing the questions and related response categories for collecting race and ethnicity data at the level of the Office of Management and Budget (OMB) categories, focusing on completeness and accuracy of response among all groups.
- Issues addressed should include use of the one- or two-question format for race and Hispanic ethnicity, whether all individuals understand and identify with the OMB race and Hispanic ethnicity categories, and the increasing size of populations identifying with "Some other race."
- The results of such studies, together with parallel studies by the Census Bureau and other agencies, may reveal the need for an OMB review across all agencies to determine the best format for improving response among all groups.
Models for Data Collection
Figure 3-4 shows models for the collection of data on race, Hispanic ethnicity, and granular ethnicity, taking into account that the capacity of information systems may limit the number of questions that can be asked. This report emphasizes the importance of collecting granular ethnicity data in addition to the OMB race and Hispanic ethnicity questions. Using the approach preferred by OMB of asking two separate questions about Hispanic ethnicity and race and then asking additionally about granular ethnicity requires collecting three separate variables, regardless of whether through paper-based or electronic collection modes (Model A). For organizations constrained to two data fields, one collection field would be used to collect responses to the OMB combined race and Hispanic ethnicity question, followed by a second collection field for granular ethnicity data (Model B).
A distinction needs to be made between limits on collection and storage of coded response information in HIT systems; some organizations are limited in storage capacity by their legacy HIT systems, but could recode responses from multiple inputs to occupy fewer fields in HIT systems. For example, if an individual self-identified as non-Hispanic, White, and Russian on a paper form, the organization could store this information using one code in its HIT system. Doing so would, of course, introduce a very large number of possible combinations for which the organization would need to have codes.21 Ultimately, to achieve compatibility across data systems, it may be necessary for organizations to upgrade their data collection and HIT systems to ensure the ability to collect, report, and use data as recommended in this report.
This chapter has explained the subcommittee's rationale for recommending continued use of the OMB race and Hispanic ethnicity categories, supplemented by locally relevant granular ethnicity categories. The health and health care needs of all racial and ethnic groups can be best addressed through comprehensive strategies that recognize the importance of documenting and addressing variations among and within the locally relevant groups, and that further provide procedures for aggregating data to provide regional or national profiles.
To collect OMB race and ethnicity data, entities should use either the one-question or two-question format, depending on their system's field capacity. In accordance with OMB guidance, when the two-question format is used, the Hispanic ethnicity question should be first, and a "Select one or more" instruction should be included; OMB has indicated a preference for the two-question format. The recording of specific multiracial combinations (e.g., American Indian or Alaska Native and Black) is preferred by the subcommittee over assigning a single "multiracial" category to all persons of mixed race. A "Some other race" response category should be included for questions on race for respondents who do not identify with any of the OMB race categories. The minimum OMB categories to be collected are, then:
- Hispanic or Latino (in the two-question format, this is a separate question, having the choice of Hispanic.
- or Latino and Not Hispanic or Latino).
- Black or African American.
- American Indian or Alaska Native.
- Native Hawaiian or Other Pacific Islander (NHOPI).
- Some other race.
The categories used for the collection of granular ethnicity should be locally relevant and selected from a national standard list. Each set of categories should include an "Other, please specify:___" option to allow individuals to self-identify if their category is not on the prespecified list. Similarly, state or national surveys might limit the number of listed categories, but should also present the "Other, please specify:___" response option. An open-ended approach with no pre-specific granular ethnicity response categories is acceptable in lieu of a specified list, but requires subsequent coding of responses according to the national standard set. The granular ethnicity question, whether presented as a closed- or open-ended question, should be separate from the question(s) involving the OMB categories.
Organizations may also want to use codes for tracking the current response status of individuals from whom they have attempted to collect race and ethnicity data, indicating unavailable (no response), declined (refused to answer), or unknown (respondent does not know) for those who fail to select a category.
Arias, E., W. Schauman, K. Eschbach, P. Sorlie, and E. Backlund. 2008. The validity of race and Hispanic origin reporting on death certificates in the United States. Hyattsville, MD: National Center for Health Statistics.
Austin, C. J., R. J. Thorpe, C. Bell, and T. A. LaVeist. 2009. Are Black Hispanics Black or Hispanic? Understanding disparities at the intersection of race and ethnicity. Paper to be presented at the American Public Health Association Annual Meeting and Expo, Philadelphia, PA, on November 10, 2009.
Baker, D. W., K. A. Cameron, J. Feinglass, J. A. Thompson, P. Georgas, S. Foster, D. Pierce, and R. Hasnain-Wynia. 2006. A system for rapidly and accurately collecting patients' race and ethnicity. American Journal of Public Health 96(3):532-537.
Bennett, C., M. de la Puente, D. Griffin, B. Harris-Kojetin, R. Harrison, J. Hill, J. Hilton, T. Leslie, and E. Paisano. 1997. Population Division Working Paper No. 1 : Results of the 1996 Race and Ethnic Targeted Test. Washington, DC: U.S. Bureau of the Census.
Blendon, R. J., T. Buhr, E. F. Cassidy, D. J. Perez, K. A. Hunt, C. Fleischfresser, J. M. Benson, and M. J. Herrmann. 2007. Disparities in health: Perspectives of a multi-ethnic, multi-racial America. Health Affairs 26(5):1437-1447.
Bonito, A. J., C. Bann, C. Eicheldinger, and L. Carpenter. 2008. Creation of new race-ethnicity codes and socioeconomic status (SES) indicators for Medicare beneficiaries. Final report, sub-task 2. Rockville, MD: RTI International.
Buescher, P. A., Z. Gizlice, and K. A. Jones-Vessey. 2005. Discrepancies between published data on racial classification and self-reported race: Evidence from the 2002 North Carolina live birth records. Public Health Reports 120(4):393-398.
CDC (Centers for Disease Control and Prevention). 1993. Use of race and ethnicity in public health surveillance (Report RR-10). Atlanta, GA: Centers for Disease Control and Prevention.
— 2000. Race and ethnicity code set version 1.0. Atlanta, GA: Centers for Disease Control and Prevention.
— 2009. National program of cancer registries facts, 2008/2009. Atlanta, GA: Centers for Disease Control and Prevention.
Chesnut, J., J. Woodward, and E. Wilson. 2007. A comparison of closed- and open-ended question formats for select housing characteristics in the 2006 American Community Survey Content Test. Washington, DC: U.S. Bureau of the Census.
CMS (Centers for Medicare and Medicaid Services). 2009. Physician quality reporting initiative. http://www.cms.hhs.gov/pqri (accessed May 22, 2009).
Cresce, A. R., A. D. Schmidley, and R. R. Ramirez. 2004. Identification of Hispanic ethnicity in Census 2000: Analysis of data quality for the question on Hispanic origin. Washington, DC: U.S. Census Bureau.
Edmonston, B., S. M. Lee, and J. S. Passell. 2000 September 22-23. Recent trends in intermarriage and immigration and their effects on the future racial composition of the U.S. Population. Paper presented at Multiraciality: How Will the New Census Data be Used?, Bard College, Annandale-on-Hudson, New York.
Edwards, B. K. 2009. NCI surveillance research program: SEER, standards for collection of race/ethnicity, measuring health disparities in cancer surveillance. NCI Surveillance Research Program. Presentation to the IOM Committee on Future Directions for the National Healthcare Quality and Disparities Reports, February 9, 2009. Washington, DC. PowerPoint Presentation.
Espey, D. K., C. L. Wiggins, M. A. Jim, B. A. Miller, C. J. Johnson, and T. M. Becker. 2008. Methods for improving cancer surveillance data in American Indian and Alaska Native populations. Cancer 113(5 Suppl):1120-1130.
Fraser, I., and R. Andrews. 2009. HCUP data in the National Healthcare Quality & Disparities Reports: Current strengths and potential improvements. Agency for Healthcare Research and Quality. Presentation to the IOM Committee on Future Directions for the National Healthcare Quality and Disparities Reports, February 10, 2009. Washington, DC. PowerPoint Presentation.
Friedman, D. J., B. B. Cohen, A. R. Averbach, and J. M. Norton. 2000. Race/ethnicity and OMB Directive 15: Implications for state public health practice. American Journal of Public Health 90:1714-1719.
Gold, M., A. H. Dodd, and M. Neuman. 2008. Availability of data to measure disparities in leading health indicators at the state and local levels. Journal of Public Health Management Practice (Suppl):S36-S44.
Hasnain-Wynia, R., R. Kang, M. B. Landrum, C. Vogeli, D. W. Baker, and J. S. Weissman. 2008 June 8. Disparities within and between hospitals for inpatient quality of care: Targeting resources to close the gap. Paper presented at the Academy Health 2008 Annual Research Meeting, Washington, DC.
Hernandez-Ramdwar, C. 1997. Multiracial identities in Trinidad and Guyana: Exaltation and ambiguity. Latin American Issues 13(4). http://webpub.allegheny.edu/group/LAS/LatinAmIssues/Articles/LAI_vol_13_... (accessed June 18, 2009).
Holup, J. L., N. Press, W. M. Vollmer, E. L. Harris, T. M. Vogt, and C. Chen. 2007. Performance of the U.S. Office of Management and Budget's revised race and ethnicity categories in Asian populations. International Journal of Intercultural Relations 31(5):561-573.
Humes, K. 2009. Remarks by Karen Humes, Assistant Division Chief for Special Population Statistics in the Population Division of the U.S. Census Bureau. Presentation to the IOM Committee on Future Directions for the National Healthcare Quality and Disparities Reports, February 9, 2009. Washington, DC.
Madans, J. H. 2009. Race/ethnic data collection: Population surveys and administrative records. National Center for Health Statistics. Presentation to the IOM Committee on Future Directions for the National Healthcare Quality and Disparities Reports, February 9, 2009. Washington, DC. PowerPoint Presentation.
Massachusetts Executive Office of Health and Human Services. 2009a. 129 CMR 2.00: Uniform reporting system for health care claims data sets. Boston, MA: Massachusetts Health Care Quality and Cost Council.
— 2009b. FY 2007 inpatient hospital discharge database documentation manual. Boston, MA: Division of Health Care Finance and Policy.
McAlpine, D. D., T. J. Beebe, M. Davern, and K. T. Call. 2007. Agreement between self-reported and administrative race and ethnicity data among Medicaid enrollees in Minnesota. Health Services Research 42(6p2):2373-2388.
Medi-Cal. 2009. Apply for Medi-Cal, individuals and families. http://www.dhcs.ca.gov/services/medi-cal/Pages/MCIndividual.aspx (accessed June 2009).
Model, S., and G. Fisher. 2008. Penalized for race, penalized for ethnicity: The earnings of Cape Verdean immigrants. Paper presented at American Sociological Association Annual Meeting, Sheraton Boston and the Boston Marriott Copley Place, Boston, MA.
NRC (National Research Council). 2006. Multiple origins, uncertain destinies: Hispanics and the American future. Edited by M. Tienda and F. Mitchell. Washington, DC: The National Academies Press.
— 2009. Experimentation and evaluation plans for the 2010 Census: Letter report. Washington, DC: The National Academies Press.
OMB (Office of Management and Budget). 1977. Statistical policy directive No. 1 , race and ethnic standards for federal statistics and administrative reporting. http://wonder.cdc.gov/wonder/help/populations/bridged-race/Directive15.html (accessed August 3, 2009).
—1997a. Recommendations from the Interagency Committee for the Review of the Racial and Ethnic Standards to the Office of Management and Budget concerning changes to the standards for the classification of federal data on race and ethnicity. Federal Register (3110-01):36873-36946.
—1997b. Revisions to the standards for the classification of federal data on race and ethnicity. Federal Register 62:58781-58790.
— 2000. OMB bulletin No. 00-02. http://www.whitehouse.gov/omb/bulletins/b00-02.html (accessed January 14, 2009).
Reilly, T. 2009. Data improvement efforts: Centers for Medicare & Medicaid Services. Centers for Medicare & Medicaid Services. Presentation to the IOM Committee on Future Directions for the National Healthcare Quality and Disparities Reports, February 9, 2009. Washington, DC. PowerPoint Presentation.
Rosenberg, H. M., J. D. Maurer, P. D. Sorlie, N. J. Johnson, M. F. MacDorman, D. L. Hoyert, J. F. Spitler, and C. Scott. 1999. Quality of death rates by race and Hispanic origin: A summary of current research, 1999. Vital Health Statistics 2(128):1-13.
Sequist, T. D., and E. C. Schneider. 2006. Addressing racial and ethnic disparities in health care: Using federal data to support local programs to eliminate disparities. Health Services Research 41(4p1):1451-1468.
Snipp, C. M. 1989. American Indians: The first of this land. New York: Russell Sage.
— 2003. Racial measurement in the American Census: Past practices and implications for the future. Annual Review of Sociology 29:563-588.
Taylor-Clark, K. 2009. Race/ethnicity/language data collection and reporting. The Brookings Institution. Presentation to the IOM Committee on Future Directions for the National Healthcare Quality and Disparities Reports, February 9, 2009. Washington, DC. PowerPoint Presentation.
Tucker, C., R. McKay, B. Kojetin, R. Harrison, M. de la Puente, L. Stinson, and E. Robinson. 1996. Testing methods of collecting racial and ethnic information: Results of the Current Population Survey Supplement on Race and Ethnicity. Washington, DC: Bureau of Labor Statistics.
U.S. Census Bureau. 1996. Population division working paper No. 16: Findings on questions on race and Hispanic origin tested in the 1996 National Content Survey. Washington, DC: U.S. Census Bureau.
— 2000. Census 2000 summary file 1: 100-percent data. Washington, DC: U.S. Census Bureau.
— 2002a. Census 2000 summary file: Technical documentation. Washington, DC: U.S. Census Bureau.
— 2002b. Modified race data summary file: 2000 Census of population and housing, technical documentation. http://www.census.gov/popest/archives/files/MRSF-01-US1.html#fig1 (accessed February 25, 2009).
— 2005. ACS 1-year PUMS ancestry code list. Washington, DC: U.S. Census Bureau.
— 2008. Ancestry. http://www.census.gov/population/www/ancestry/ancoverview.html (accessed May 24, 2009).
U.S. Senate Finance Committee. 2009. Description of policy options, transforming the health care delivery system: Proposals to improve patient care and reduce health care costs. Washington, DC: U.S. Senate Committee on Finance.
Wallman, K. K. 2009. Current and future federal standards for race/ethnicity/language data. U. S. Office of Management and Budget. Presentation to the IOM Committee on Future Directions for the National Healthcare Quality and Disparities Reports, February 9, 2009. Washington, DC. PowerPoint Presentation.
Wei, I. I., B. A. Virnig, D. A. John, and R. O. Morgan. 2006. Using a Spanish surname match to improve identification of Hispanic women in Medicare administrative data. Health Services Research 41(4):1469-1481.
1 The OMB-approved SSA Application for a Social Security Card instructs applicants to "Check one only": Asian, Asian-American or Pacific Islander; Hispanic; Black (Not Hispanic); American Indian or Alaska Native; or White (Not Hispanic). These five categories do not correspond to the 1997 OMB standards, which split Asians and Pacific Islanders into separate categories, nor do the instructions to "Check one only" allow multirace individuals to "Mark one or more."
2 A 2009 white paper by the U.S. Senate Finance Committee presented proposals to improve patient care and health delivery. One proposal included a comprehensive database required of CMS to expand existing data sources, data sharing, and matching across federal and state claims and payment data, including HHS; SSA; the Departments of Veterans Affairs (VA), Defense (DOD), and Justice (DOJ); and the Federal Employees Health Benefit Program (FEHBP) (U.S. Senate Finance Committee, 2009). The results of this and other proposals to revise payment systems and policies in the Medicare program remain to be seen.
3 Medicare Improvements for Patients and Providers Act of 2008, Public Law 110-275 § 118, 110th Cong., 2d sess. (July 15, 2008).
4 Children's Health Insurance Program Reauthorization Act of 2009, Public Law 111-3, 111th Cong., 1st sess. (February 4, 2009).
5 The categories collected on the standard death certificate are included in Table 3-2.
6 Personal communication, J. Madans, National Center for Health Statistics, April 17, 2009.
7 Personal communication, D. Love, National Association of Health Data Organizations, June 5, 2009. 8 The 2005 Omnibus Appropriations Bill, at the urging of Congressman Jos� E. Serrano (D-NY), directed that any collection of Census data on race identification must include "Some other race" as a response category. In previous censuses, the Census Bureau had sought and received OMB approval to include "Some other race" as a response category (U.S. Census Bureau, 2002b).
9 Dominicans (58 percent) were the group most likely to self-identify as "Some other race" in Census 2000 (NRC, 2006; Tafoya, 2004).
10 Joint resolution relating to the publication of economic and social statistics for Americans of Spanish-origin or descent, Public Law 94-311 (15 U.S.C. 1516a), 94th Cong. (June 16, 1976).
11 Non-response to the Hispanic origin question decreased to 5.2 percent from 8.6 percent when the Hispanic origin question was asked before rather than after the race question (U.S. Census Bureau, 1996b).
12 Sutter Health collects the five OMB race categories with a Hispanic/Non-Hispanic notation. For example, an individual may self-identify as Black/Hispanic or Black/Non-Hispanic (Personal communication, T. Van, Sutter Health, July 22, 2009). This is another way to capture these data in accordance with the OMB standards.
13 All possible combinations of the six OMB categories results in 64 combinations.
14 Espinoza v. Farah Mfg. Co., 414 U.S. 86, 88 (1973).
15 Personal communication, S. Ganesan, Centers for Disease Control and Prevention, June 3, 2009.
16 The separate ancestry question was included only on the Census "long form." This form was sent to one in six households. The American Community Survey (ACS), an annual survey sent to a sample of households, has replaced the Census "long form" and includes a question about ancestry.
17 Personal communication, K. Taylor-Clark, The Brookings Institution, January 15, 2009.
18 Personal communication, G. H. Ting, Wellpoint, Inc., February 19, 2009.
19 The Census list of categories does not include religiously affiliated ancestries (e.g., Ashkenazi Jewish) because of the Bureau's constitutionally rooted decision not to identify or count religious populations. For health care purposes, religion may be coded as a separate variable from race and ethnicity. For example, the HL7 EHR System Functional Model states that systems shall provide the ability to capture, present, maintain, and make available for clinical decisions patient preferences such as language, religion, spiritual practices, and culture (Fischetti et al., 2007).
20 Write-in responses to the questions on race and Hispanic ethnicity were allocated to an OMB race or Hispanic ethnicity category using the 90 Percent Rule only in the Census' Modified Race-Age-Sex (MARS) file. The MARS file is used by other agencies seeking denominators consistent with numerators collected in systems in which "Some other race" is not an option. Otherwise, write-in responses to "Some other race" are reported as they were received in all data released and published by the Bureau.
21 All possible combinations of just the six OMB categories results in 64 combinations. Introducing granular ethnicities would drastically increase the possible combinations.