Statement of Task: Subcommittee on Standardized Collection of Race/Ethnicity Data for Healthcare Quality Improvement
A subcommittee of experts will report to the IOM Committee on Future Directions for the National Healthcare Quality and Disparities Reports regarding the lack of standardization of collection of race and ethnicity data at the federal, state, local, and private sector levels due to the fact that the federal government has yet to issue comprehensive, definitive guidelines for the collection and disclosure of race and ethnicity data in healthcare quality improvement. The subcommittee will focus on defining a standard set of race/ethnicity and language categories and methods for obtaining this information to serve as a standard for those entities wishing to assess and report on quality of care across these categories. The subcommittee will carry out an appropriate level of detailed, in-depth analysis and description which can be included in the overall report by the committee and as a separate stand alone report.
OMB describes these categories as the minimum set and encourages the collection of more detailed data provided those data can be aggregated back to the minimum categories (OMB, 1997a). Progress has been made in incorporating these categories into the collection and presentation of data in health care settings. However, some health care–related data collection efforts still do not employ these basic standard categories.
While OMB has not established a list of language categories, the collection of language data has been pivotal in determining whether there has been discrimination by “national origin” under Title VI of the Civil Rights Act of 1964,1,2 and federal policies state that “reasonable steps” need to be taken so that persons of limited English proficiency can have “meaningful access” to programs or activities without charge for language services.3 Additionally in 2000, HHS released its National Standards on Culturally and Linguistically Appropriate Services (CLAS), which encourage all health care organizations and individual providers “to make their practices more culturally and linguistically accessible,” including the use of race, ethnicity, and language data in program assessments and incorporation of these data into health records and organizational management systems (HHS, 2007).
The OMB race and Hispanic ethnicity categories represent broad population groups used for an array of statistical reporting and analytic purposes, including health care quality assessment and identification of disparities (AHRQ, 2008a; Cohen, 2008; Flores and Tomany-Korman, 2008; IOM, 2008; Kaiser Family Foundation, 2009). Chapter 2 illustrates that these categories alone, however, are insufficient to illuminate many disparities and to target quality improvement efforts where they may be most needed. Since disparities can exist within those broad OMB categories, there is value in collecting and utilizing data incorporating more fine-grained categories than those of OMB (Blendon et al., 2007; Jerant et al., 2008; Read et al., 2005; Shah and Carrasquillo, 2006). The subcommittee recommends a separate question to collect data on granular ethnicity—defined as “a person’s ethnic origin or descent, ‘roots,’ or heritage, or the place of birth of the person or the person’s parents or ancestors…” (U.S. Census Bureau, 2008)—in addition to soliciting data in the OMB race and Hispanic ethnicity categories (Figure S-1). Research also shows that not all individuals identify with the current OMB race categories so the subcommittee recommends expanding the race categories to six choices by including a “Some other race” option