Study Charge and Approach
The IOM, under a contract with the Agency for Healthcare Research and Quality (AHRQ), formed the Subcommittee on Standardized Collection of Race/Ethnicity Data for Healthcare Quality Improvement to report on the issue of standardization of race, ethnicity, and language variables; define a standard set of race, ethnicity, and language categories; and define methods of obtaining race, ethnicity, and language data (Box 1-3). To address this charge, the subcommittee identifies categories and types of questions that allow for the development of uniform standards for the collection, aggregation, and reporting of race, ethnicity, and language data for quality improvement in health care settings.
The subcommittee's title and its charge refer specifically to health care but not health in general. The subcommittee recognizes that health care is one element that contributes to people's health, and that the effects of race, ethnicity, and language on health in general are important. However, the language in the statement of task, specifically "in healthcare quality improvement" and "report on quality of care," led the subcommittee to focus its discussion and recommendations on the health care domain. In its recommendations regarding the collection of race, ethnicity, and language data, the subcommittee emphasizes areas such as care delivery sites (e.g., hospitals, physician practices) and public and private insurers involved in measuring and improving the quality of health care. Nonetheless, recommendations can apply to data collection activities in public health (e.g., state-sponsored immunization registries) when those data can be used to target interventions and resources to ensure equity in care and health outcomes. The subcommittee's recommendations include surveys addressing the quality of care or the utilization of care.
Box 1-3. 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.
Vital statistics data sets present a special case, since data from birth or death certificates may be linked to data from health care settings to identify disparities in health care and health outcomes. Knowledge about differentials in mortality along race and ethnicity lines can help care providers focus inquiries about specific populations to determine the quality of their care. However, these data collection activities are organized and supported for purposes beyond health care and health care quality improvement, and recommendations set in the narrower context of health care quality improvement may conflict with other important considerations. The subcommittee did not focus its discussions on vital statistics data collection processes, nor do its recommendations specifically include those processes. New national standards have been set for birth and death records, incorporating categories beyond those set by the Office of Management and Budget (OMB); states and localities are free to use additional categories and are encouraged to do so along the lines of the subcommittee's recommendations.
The subcommittee was formed in conjunction with the Committee on Future Directions for the National Healthcare Quality and Disparities Reports. The subcommittee met in person four times during the course of the four-month study and conducted additional deliberations through telephone conferences. It heard public testimony from a wide range of experts during two public workshops and additional interviews. Staff and committee members met with and received information from a variety of stakeholders and interested organizations, including health plans, advocacy groups, health services researchers, and Health IT implementation experts.
The subcommittee has approached its task by evaluating the two interrelated purposes and uses of data collection (Figure 1-3): improvements in individual patient—provider care interactions, and system-level improvement. In patient—provider interactions, effective two-directional communication is essential to the provision of high-quality, patient-centered care. Quality care can depend on a provider's identification and understanding of the cultural beliefs and experiences of his or her patients, and on the expression and understanding of health care needs communicated by patients. Health services researchers have adopted the term cultural competence to describe the goal of creating a health care system and workforce that are capable of delivering high-quality care to all patients through an array of efforts, including training of physicians and availability of health care interpreters (Betancourt et al., 2005). Knowledge of a patient's race, ethnicity, and language and communication needs can assist in the provision of patient-centered care by accounting for the "impact of emotional, cultural, social, and psychological issues on the main biomedical ailment" (Hedrick, 1999, p. 154). At the system level, race, ethnicity, and language data serve an evidentiary purpose for improving population health, health care quality, and equity by identifying variations related to these characteristics. System-level analyses include variations across a broad range of health care entities, including physician practices, community health centers, hospitals, health plans, state government bodies, and federal agencies.
The subcommittee approached its task by defining two terms in its framework for recommendations; the term variable refers to the dimensions of race, ethnicity, and language on which is it important to have data; the term categories refers to the possible discrete groupings of individuals that can occur in any variable. The subcommittee developed principles to guide its deliberations, including the need for:
- Nomenclature for each variable and its categories that would maximize individuals' ease and consistency of identification with those categories.
- Local decision making about categories that would be useful given the size and diversity of the population served or surveyed, as well as the consideration that quality improvement activities tend to be locally based.
- A framework that would allow some flexibility in approaches to collection but retain uniform categories, in recognition of the different capacities of information systems.
- Fostering comparability across the variety of actors that collect and use these data.
Building on Previous Studies
In developing its rationale and framework for standardization, the subcommittee considers previous research on the categorization, collection, and use of race, ethnicity, and language data in health care settings. In 2000, Congress asked the National Academies to assess the ability of HHS data collection systems to measure racial, ethnic, and socioeconomic disparities. The request resulted in the 2004 National Research Council report Eliminating Health Disparities: Measurement and Data Needs, which recommends actions for HHS to take to ensure the routine collection and reporting of race and ethnicity data. The report acknowledges the importance of collecting data on race, ethnicity, socioeconomic status, and language and acculturation for use in making statistical inferences about disparities, but notes the lack of standardized collection and reporting of these data across all entities (NRC, 2004b).
NCVHS has historically emphasized to its HHS counterparts the necessity and benefits of collecting race, ethnicity, and language data, among other variables, under the premise that these data are essential to monitoring the health of the nation (NCVHS, 2001, 2004, 2005). In several reports over the past decade, the NCVHS Subcommittee on Populations has discussed challenges to collecting and using these data. The present report addresses these data collection challenges and proposes a framework for moving forward with standardized data collection across all health and health care entities, not just within HHS agencies or by recipients of federal funds. Previous reports have reiterated the importance of collecting more detailed ethnicity data than are captured by the OMB standard categories; this report proposes a template of categories so that entities wishing to collect detailed data can do so in systematic, uniform ways.
Limitations of the Study
Like previous IOM committees, the subcommittee recognizes the linkages among socioeconomic status, health literacy, and immigration with race, ethnicity, and language; however, these dimensions were beyond the scope of its charge. Lower socioeconomic status has been associated in the literature with poor health outcomes and high mortality rates since at least the early twentieth century (Isaacs and Schroeder, 2004; Link and Phelan, 1996; Lutfey and Freese, 2005). Time in the United States and immigration status also have implications for one's health and access to health care (Kagawa-Singer, 2006, 2009; Oh et al., 2002; Portes and Hao, 2002; Wadsworth and Kubrin, 2007).
While the subcommittee focuses exclusively on the categorization of race, ethnicity, and language—as it was charged to do—it recognizes that some differences in health care among racial, ethnic, and language groups reflect differences in socioeconomic status, immigration, and health literacy. Studying the roles of these constructs nevertheless presumes categorizations of race, ethnicity, and language of reasonable credibility and consistency for patients from whom the data are collected, providers who collect the data, and those analyzing the data for quality improvement purposes.
While the subcommittee concludes that a full consideration of Health IT technicalities is beyond the scope of its charge, its members are mindful of Health IT considerations in its recommendations. The subcommittee also notes the timeliness and relevance of its work to Section 13001 of ARRA10. The intersection between the subcommittee's work and emerging Health IT standards will be further discussed in Chapter 6 of this report.
Overview of the Report
The subcommittee is charged with recommending standards for the categorization and collection of race, ethnicity, and language data. Collection of data at various levels of the health care system implies that the data must be amenable to reporting and aggregation in consistent ways. To frame how the purposes and uses outlined in Figure 1-3 could best be met, the subcommittee addresses the following areas:
- Defining the specific variables to be collected: race (including the applicability of the OMB categories), ethnicity (whether limited to Hispanic ethnicity or expanded to other groupings), language (whether encompassing English language proficiency and spoken and/or written language needed for effective communication).
- Describing the nomenclature for each variable to ensure that the categories for each contain as valid and reliable data as possible.
- Defining a classification system for race and ethnicity that allows a hierarchical rollup so categorical data can be combined.
- Suggesting standardized approaches to coding race, ethnicity, and language categories to foster data linkages.
- Addressing key points of leverage to ensure both patient—provider and system-level improvement.
Chapter 2 reviews the available research on how more discrete categorization of ethnicity can reveal disparities and allow more precise targeting of initiatives for health care quality improvement. Chapter 3 addresses the utility of the OMB categories in capturing important cultural and social groups for statistical reporting before considering the collection of more granular ethnicity data and how standard coding of categories can allow for the sharing of data beyond a single service site. The chapter examines the geographic distribution of racial and ethnic groups across the United States and the need for balance between nationally uniform categories for data collection and flexibility in how different subsets of categories are used for local quality improvement. Chapter 4 reviews different approaches germane to the collection of language data, explores the need for data on spoken and written language, and examines language coding practices. Chapter 5 covers the challenges and barriers faced by health care organizations and providers of care in collecting these variables. The chapter explores how these challenges can be addressed through direct collection methods and use of indirect estimation techniques. Chapter 6 examines the role of various entities in informing and shaping the uptake of standardized categories of race, ethnicity, and language data. The chapter describes the opportunities afforded through the adoption of EHRs and more integrated Health IT systems that are likely to extend the capabilities of health care providers at all levels to collect and use these data systematically.
Race, ethnicity, and language data are tools for fighting discrimination, understanding disparities, and providing culturally and linguistically relevant services (Burdman, 2003). Thus, these data are useful and important for identifying and, ultimately, acting to reduce and eliminate disparities in health status and health care. These data alone, however, cannot address how to fix the issues brought to light in Chapter 2. Measurement cannot ensure the provision of culturally and linguistically appropriate care that incorporates racial and ethnic sensitivities, accommodates diverse views and approaches, and reduces disparities by improving access and quality.
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1The 2000 Census: Counting Under Adversity provides an extensive review of the historical development of the racial and ethnic classifications used by the Bureau of the Census. Chapter 3 in Multiple Origins, Uncertain Destinies: Hispanics and the American Future reviews the origins of Hispanic ethnicity and its relationship to race.
2 Other definitions of race abound. For example, OMB states that race and ethnicity should not be interpreted as being primarily biological or genetic in reference, but rather, thought of in terms of social and cultural characteristics as well as ancestry (OMB, 1997b). The Census Bureau complies with the OMB standards, noting that the standards "generally reflect a social definition of race recognized in this country. They do not conform to any biological, anthropological or genetic criteria " (U.S. Census Bureau, 2001).
3 EHRs are further defined in Chapter 6 of this report.
4 California, Maryland, New Hampshire, New Jersey, New York, and Pennsylvania prohibit insurers from requesting an applicant's race, ethnicity, religion, ancestry, or national origin in applications, but the states allow insurers to request such information from individuals after enrollment (AHIP, 2009).
5 A list of legislation relevant to race, ethnicity, and language data is included in Appendix B.
6The Civil Rights Act of 1964, Public Law 88-352, 78 Stat. 241, 88th Cong., 2d sess. (July 2, 1964).
7Medicare Improvements for Patients and Providers Act of 200, Public Law 110-275 § 118, 110th Cong., 2d sess. (July 15, 2008).
8American Recovery and Reinvestment Act of 2009, Public Law 111-5 § 3002(b)(2)(B)(vii), 111th Cong., 1st sess. (February 17, 2009).
9Health Insurance Portability and Accountability Act of 1996, Public Law 104-191, 104th Cong., 2d sess. (August 21, 1996).
10 Section 13001 is known as the Health Information Technology for Economic and Clinical Health Act or the Health ITECH Act.