Obtaining data on patient race, ethnicity, and primary language in health care organizations: current challenges and proposed solutions.(Special Section Race and Ethnicity)

Numerous studies document that racial and ethnic minorities often receive lower quality care than nonminorities. Although aggregate national data are important, sample sizes often limit their usefulness to only broad racial and ethnic groups. In addition, the data in these surveys may come from records rather than direct interviews of individuals and the information may be based on the observation of the person filling out the record. All these factors leave the quality and consistency of the data questionable. Although much information on health care comes from health care organizations (HCOs) (hospitals, health plans, and medical groups), data on race, ethnicity, and language are often not available or are incomplete (Ver Ploeg and Perrin 2004). In this paper, we focus on the collection of race, ethnicity, and language data by HCOs.

Valid and reliable data are fundamental building blocks for identifying differences in care and developing targeted interventions to improve the quality of care delivered to specific population groups. There have been clear calls to action to systematically document disparities and tailor interventions to improve the quality of care. In fact, the drive toward measuring quality is based on the idea that performance measures can help patients, consumers, providers, and purchasers understand what high-quality health care is and increase demand for it. The capacity to measure and monitor quality of care for various racial/ethnic populations rests on the ability both to measure quality of care in general and to conduct similar measurements across different racial/ ethnic groups (Fremont and Lurie 2004; Lurie, Jung, and Lavizzo-Mourey 2005).

The Institute of Medicine (IOM) Crossing the Quality Chasm report focuses on the quality gap, identifies current practices that impede quality care, and explores how systems approaches can be used to implement change. The subsequent IOM report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Healthcare places its focus on disparities in health care and concludes that racial and ethnic minorities are less likely to receive even routine medical procedures and experience lower quality health care. Further, these two reports and others urge collecting data on patient race, ethnicity, and language. The report by the National Research Council of the National Academies, Eliminating Health Disparities: Measurement, and Data Needs, speaks directly to the importance of collecting valid and reliable data to reduce disparities and improve quality.

Reflecting this mandate, efforts are underway by America's Health Insurance Plans (AHIP) to improve the collection of race, ethnicity, and primary language data in health plans and by the Health Research and Educational Trust (HRET), the research and educational affiliate of the American Hospital Association, to improve data collection in hospitals. The public appears to support collecting this information. Attempts to eliminate the collection of race and ethnicity data in California under Proposition 54 were soundly defeated when opposition arose (Torrassa 2003). A national survey (Robert Wood Johnson Foundation 2003) of adults found that over 50 percent of the respondents favor legislation allowing race/ethnicity data collection when told of its benefits.

A recent study conducted by the authors (Baker et al. 2005, 2006) of patients' attitudes towards health care providers collecting information about their race and ethnicity found that 80 percent agreed that health care providers should collect information on patients' race and ethnicity, but many felt uncomfortable giving this information. We discuss findings from this study in more detail in the section entitled "Barriers to Collecting Data Directly from Patients."

In this article, we provide an overview of why HCOs should collect race, ethnicity, and language data and review current practices. We discuss the rationale for collecting this information directly from patients and/or enrollees (i.e., self-report), describe foreseeable obstacles, and explicate the mechanics, even the art, of overcoming them. We propose recommendations for standardizing data collection practices and discuss policy implications.

WHY COLLECT RACE, ETHNICITY, AND PRIMARY LANGUAGE DATA IN HCOs

HCOs should collect information on patients' race, ethnicity, and language so that they can understand the needs of the population they serve, measure disparities in care within their institution, initiate programs to improve quality of care, and provide patient-centered care. Aaron and Clancy (2003) assert that a growing consensus accepts a strategy integrating reduction in disparities in quality of care as a coherent and efficient approach to redesigning the U.S. health care system. David Williams spoke of the inherent tension in blending the fields of quality and healthcare disparities at the Robert Wood Johnson Foundation Conference on Disparities and Quality of Care (2005) stating, "... we cannot necessarily assume that improving quality will reduce disparities, therefore race-specific strategies may be necessary," whereas Judith Hibbard stated, "...we can improve quality by providing patient-centered care." Both tactics require HCOs to know who there patients are.

Responding to Communities and Providing Patient-Centered Care

Communities want HCOs to be accountable and responsive to them. According to the American College of Physicians (ACP) position paper on racial and ethnic disparities in health care "an ongoing dialogue with surrounding communities can help a HCO integrate cultural beliefs and perspectives into health care practices and health promotion activities"(2004). Further, effectively managing the health care of patients and using culturally appropriate care improves the health of communities (ACP 2004).

Tracking the racial/ethnic and language composition with concurrently changing health care needs of communities is vital if HCOs are to fulfill their functions. Race/ethnicity and linguistic norms contribute to the definition of what symptoms are noteworthy and how symptoms are presented (Bartlett et al. 1984). As HCOs strive to develop systems and practices that ensure care of all patients is truly patient-centered, understanding the racial/ethnic and language contexts of their patient population is vital. …