To get good info on race and ethnicity — ask

Researchers and policy-makers are finding that efforts to address racial and ethnic disparities in health care run into difficulty because of a very basic problem: it's hard to collect accurate data on patients' race, ethnicity, and preferred language, and those data are crucial in designing and implementing disparity-reduction programs.

A Commonwealth Fund study reported in the October 2005 Journal of General Internal Medicine found providers often are reluctant to risk alienating patients by asking for this potentially sensitive information. And some patients are concerned about why the information is needed.

Researchers from Northwestern University near Chicago found that there are right and wrong ways to ask for the information.

"While most patients interviewed agreed that hospitals and clinics should document the racial and ethnic makeup of their patient populations," the Commonwealth Fund study reported, "there were clear variations in participants' comfort. Levels were highest when patients were told that the information would be used to monitor and ensure equal quality care for all."

Also, the study found that when hospital patients were asked to describe their race and ethnicity in their own words, they were more receptive to answering the question and gave more accurate answers. When compared with the traditional method of asking patients to identify with one of the standard race and ethnicity categories provided by the federal Office of Management and Budget (OMB), researchers found that allowing patients to use their own words resulted in more complete and usable information. Patients were less likely to choose the "unknown" or "other" categories to identify themselves because they had the ability to be specific.

"What's unique about this method is that it doesn't force a patient into an inappropriate category, or leave out the data altogether because there isn't a category that fits," said lead researcher David Baker. "Our research shows it's a method that works better for patients and researchers."

With other research indicating that U.S. racial and ethnic minorities often receive lower quality of care than whites, Mr. Baker said the first step toward addressing that problem "is for health care providers to routinely collect data on patients' race, ethnicity, and language and link these data to measures of quality, safety, and utilization."

The study was conducted in Northwestern University's General Internal Medicine clinic, which has not routinely collected information on patient race and ethnicity. A total of 220 white, black, Hispanic, Asian, multiracial, and other patients were interviewed about their attitudes and concerns around collection of race and ethnicity data as they left the clinic.

8 in 10 favor data collection

Fully 80% of those interviewed said it is important for health care providers to collect and track information on patients' race and ethnicity. And while 28% expressed significant discomfort disclosing their own information to a clerk or administrator, many said they would feel more comfortable giving information to a nurse or doctor.

The researchers reported that comfort levels were significantly lower for blacks than for whites, and blacks were more likely than whites to express concern that the information would be used to discriminate against patients. Also, when compared with whites, blacks and Hispanics more often said they would be somewhat or much less likely to go to a hospital or clinic than routinely collected racial and ethnic information.

As part of the study, patients were read four different rationales for collecting the information: 1) to monitor and assure quality of care for all patients; 2) to abide by government regulations; 3) to ensure appropriate hiring and training of medical personnel; or 4) to monitor and assure quality of care for the individual patient.

The notion of monitoring and assuring quality of care for all patients had the most positive impact on patients' comfort levels, the researchers reported. For the 51% of study participants who expressed any level of discomfort reporting their race and ethnicity, this reason for collecting the data brought about the most significant improvement in comfort, with 25% saying it made them somewhat more comfortable and 26% saying it made them much more comfortable.

For nonwhite participants, the rationale of meeting government requirements actually reduced comfort levels. The researchers speculated the reason could be that the message implied the information is not useful to health care providers in improving quality of care. Respondents also were less comfortable with the rationale of ensuring appropriate hiring and training of medical personnel because, the authors speculated, of concerns that staff would be trained in racial stereotyping. And patients did not respond well to the notion that the data were needed to monitor and assure quality of care for the individual patient, perhaps because it sounded like a promise the provider could not fulfill.

The study found that in addition to providing more accurate data, their recommended method proved to be efficient, making it possible to accurately capture patients' verbatim responses in an average of 37 seconds, only 17 seconds longer than the average time for completing the OMB questions.

According to the researchers, concerns about giving out race and ethnicity information can be addressed by clearly explaining to patients and community leaders the reasons for gathering the data, and by seeking their input on how best to do it. Most important, the researchers said, providers who collect such information must use it to examine and address disparities, and then share the results with patients and communities.

"Good information about race and ethnicity is crucial to health care providers' efforts to ensure that all patients receive equal levels of high-quality health care," said Commonwealth Fund senior program officer for programs on quality of care for underserved populations Anne Beal. "Adopting this new method can allow researchers and health care providers to more accurately determine the makeup of their patient population and to immediately identify new groups that are coming to health facilities."

Mr. Baker can be contacted at dwbaker@northwestern.edu. A journal abstract is available at www.blackwell-synergy.com/doi/abs/10.1111/j.1525-1497.2005.0195.x.