Obtaining data on patient race, ethnicity, and primary language in health care organizations: current challenges and proposed solutions

Health Services Research, August, 2006 by Romana Hasnain-Wynia, David W. Baker

PRIMARY LANGUAGE

Limited-English speaking patients need to be able to communicate with their health care providers to ensure that the quality of their care is not compromised. Solid evidence has shown that language barriers can adversely affect quality of care (Timmins 2002; Ngo-Metzger 2003; Weech-Madonado et al. 2003). The 2000 U.S. Census supplementary survey indicates that 30.5 million U.S. residents were born in another country and foreign-born residents collectively speak over 150 languages. A significant number of people have limited English proficiency, that is, "a limited ability to read and write English and speak English "very well"(Ganey 2002). Obviously, questions about a patient's language must be directly addressed to the individual because it is not possible for a registration or admitting clerk to "guess" a person's language.

BARRIERS TO COLLECTING DATA DIRECTLY FROM PATIENTS

Although the rationales for collecting information directly from patients are numerous, there are some practical challenges that must be overcome to do this. Collecting information about the race and ethnicity of patients locally, where they go to get care--in hospitals, clinics, and physicians' offices--can be sensitive for many reasons. Patients entering a hospital or doctor's office expect that they are entering into a "caring relationship." Asking questions about their race and ethnicity may undermine this relationship. Health plans can collect these data apart from where care is delivered (e.g., at time of enrollment), but there still may be concerns on the part of the patient/enrollee about (1) how the data will be used; (2) their privacy and methods to ensure confidentiality; and (3) how to answer questions if the categories provided are inadequate.

Negative Reactions from Patients

Within the therapeutic relationship, there is an element of unavoidable vulnerability and trust where the patient is at a disadvantage before caregivers (Heitman 1994). People who are knowledgeable and self-confident while healthy may feel powerless and uncertain as patients. Racial, ethnic, cultural, and linguistic discordance between patients and providers can increase the potential for misunderstanding, distrust, and ability to communicate effectively. It is therefore vital to collect information about patients' race, ethnicity, and language in a manner that does not erode trust or impair therapeutic relationships. Patients need to understand why they are being asked to provide this information and be given reassurances so that they feel comfortable doing so. We understand that even with reassurances, some patients may be put off by questions about their race/ethnicity. If an institution explains to patients that race/ethnicity data will be used to monitor quality, does this imply that health care disparities exist in the institution?

Concerns about alienating patients and fear of profiling are very real. We found that the vast majority of patients in a pilot study at the Northwestern Medical Faculty Foundation General Internal Medicine Clinic in Chicago agreed that it is important to collect data on race and ethnicity. Almost half stated that they were somewhat or very concerned that the data might be used to discriminate against patients. A small percentage even said they would be less likely to go to a hospital or clinic that collected race and ethnicity data. Thus, the study concluded that although patients see the importance of asking these questions, they need to understand the context of why they are asked to alleviate their concerns (Baker et al. 2005).