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Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement
and language need so that these data will be available to inform health care quality improvement endeavors. In accordance with the subcommittee’s statement of task, the recommendations offered in Chapters 3 through 5 for gathering these data are intended “for those entities wishing to assess and report on quality of care across these categories.” The subcommittee’s recommendations, however, will likely have greater influence if they are adopted as HHS standards, required in federally funded programs, and incorporated into industry standards for electronic health record (EHR) systems and other forms of health information technology (HIT). Additionally, states, standards-setting organizations (e.g., the Joint Commission and the National Committee for Quality Assurance [NCQA]), and professional medical bodies have a role to play in fostering the adoption and use of standardized race, ethnicity, and language data for quality improvement purposes.
HHS is a prime locus of the subcommittee’s recommendations for standardization and implementation because of its focus on health care quality and the elimination of disparities in health and health care in policy and through its funded programs, as well as its history in promoting the collection of race, ethnicity, and language data to ensure compliance with applicable statutes and regulations (AHRQ, 2008a, 2008b; HHS, 2000, 2003, 2007, 2009e). Additionally, HHS is responsible for implementation of health information technology provisions of the American Recovery and Reinvestment Act of 2009 (ARRA) (HHS, 2009d). Although broad application of the EHR1 will take a number of years (Blumenthal, 2009), the need for race, ethnicity, and language data is now, so efforts to identify and address health care disparities can proceed, and thereby targeted actions can be taken to raise the overall quality of care in the nation. The EHR is a tool with the potential to reduce repetitive collection and to facilitate the linkage of demographics to some quality measures. The data collection issues for other current HIT systems do not differ significantly from those involved in future EHR applications, so providers should begin to put in place now the processes for the capture and sharing of race, ethnicity, and language data.
Framework for the Collection of Race, Ethnicity, and Language Variables
The framework for the collection of data on race, Hispanic ethnicity, granular ethnicity, and language variables proposed by the subcommittee and detailed in Chapters 3 through 5 is summarized in Figure 6-1. Templates for national lists of granular ethnicity and language categories are provided in Appendixes E and I, respectively. These templates can serve as building blocks upon which HHS can develop and maintain comprehensive national standard lists of granular ethnicities and languages based on the experiences of participants in health care delivery and quality improvement. The subcommittee does not specify a preset number of granular ethnicities or languages that all entities must collect; instead, in the previous chapters, it affirms the importance of selecting locally relevant categories from these lists, with an opportunity for self-identification through an open-ended “Other, please specify: __” response option.
Entities may also want to design their information system to have a way to track whether a person has “declined” to provide an answer, or the ethnicity is “unknown” (e.g., in the case of an adopted child) or “unavailable” (e.g., no direct contact has occurred to elicit information); these are not response categories for patients, but to be utilized for tracking. Additionally, some information systems and EHR systems have the capability to record whether information is directly “self-reported” by patients—the preferred approach—or is “observer-reported” (e.g., as is necessary when a person arrives unconscious in an emergency room).2 It would be most useful if these terms were also standardized across collection systems.
Standard lists of categories of granular ethnicity and languages will need to be formalized from the category templates offered by the subcommittee for race and ethnicity (Appendix E) and for languages (Appendix I). As
In this document, EHR means a patient record owned and maintained by a provider entity; a personal health record is a medical or health record owned and maintained by a patient him- or herself. The Office of the National Coordinator’s definition is included in the following section on Electronic Health Records.
Personal communication, S. Ganesan, Centers for Disease Control and Prevention, June 3, 2009.