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

Hospitals

Hospitals play a major role in a community's health care delivery system. As communities become more diverse, hospitals are challenged to design and implement programs and treatment protocols that reduce disparities and improve quality of care (Ver Ploeg and Perrin 2004). However, the infrastructure for collecting and using race, ethnicity, and language data in hospitals is underdeveloped leading to problems of redundancy, inefficiency, and inaccuracy.

A Commonwealth Fund Report (Hasnain-Wynia, Pittman, and Pierce 2004) focusing on the current state of race, ethnicity, and primary language data collection in hospitals indicates that 78 percent of hospitals collect information on patient race and ethnicity, but the quality of these data is quite poor. Of these, 56 percent indicated that more than one unit or clinic within the hospital collected these data, but that this information was not shared. Despite expert recommendations that patients be asked to self-report their race and ethnicity, over half of the hospitals obtained these data by observation of admitting or registration staff, especially in the emergency department. Most (86 percent) hospitals provide a limited number of categories that patients or guardians can select to indicate race and ethnicity; 13 percent give patients the option of using a "fill in the blank" response, though often these text responses are not coded. A small percentage of hospitals (10 percent) provide more granular categories tailored to their local patient/community demographics, suggesting that some hospitals are willing to adjust categories to capture information on important patient subgroups.

Medical Group Practices

Little is known about the collection of data on race and ethnicity in medical group practices. Medical groups are less likely than hospitals to collect race and ethnicity data (Nerenz, Currier, and Paez 2004). Seventy-five percent of medical groups that responded to one survey did not collect race/ethnicity data because they thought it was unnecessary or that collection was potentially disturbing to patients. Medical groups that collected the data did so primarily for internal quality improvement or disease management purposes, and some were closely affiliated with hospitals that collected data on race/ethnicity as part of the inpatient registration process.

This is a particularly important gap. We know far less about health care disparities in the outpatient as compared with the inpatient setting. To some degree, this reflects a general lack of knowledge about quality of care in the outpatient setting. However, the increasing adoption of electronic medical records systems should help surmount this barrier, and routine data collection by race/ethnicity in medical groups would greatly expand our knowledge and help identify targets for interventions.

Community Health Centers (CHCs)

Perhaps because of the tremendous diversity of patients seen at CHCs and their mandate to have their boards of directors represent their communities, CHCs appear to be ahead of the curve in collecting information on patient race and ethnicity. The Bureau of Primary Health Care (BPHC) has demonstrated success in collecting data in this setting. BPHC's Universal Data System stores data from 700 grantees at 3,000 health care sites. With the backing of a statutory mandate, the BPHC has established specific racial, ethnic, and primary language data collection and reporting requirements applicable to its network of CHCs. Enrollment data have been collected periodically, and plans are underway to secure disaggregated data to assess and report on clinical outcomes by race, ethnicity, and primary language.