According to the Institute of Medicine, standardized data collection is critical to understanding and eliminating racial and ethnic disparities in health care. A critical barrier to eliminating disparities and improving the quality of patient care is the frequent lack of even the most basic data on race, ethnicity, and primary language of patients within health care organizations. The methods for collecting these data are disparate and, for the most part, incompatible across organizations and institutions in the health care sector.
The Health Research and Educational Trust (HRET) is working with a consortium of six leading hospitals and health systems to address racial and ethnic disparities in treatment and outcomes. To identify current practices around race, ethnicity, and primary language data collection in hospitals, we conducted site visits to each of the consortium members (Henry Ford Health System, Kaiser Permanente, Massachusetts General Hospital, Northwestern Memorial Hospital, Parkland Memorial Hospital, and the University of Pittsburgh Medical Center Health System) to address questions about their data collection practices. In addition, we surveyed 1,000 hospitals nationwide to provide a wide-angle snapshot of what is taking place regarding race, ethnicity, and primary language data collection. The most recent (2003) American Hospital Association Annual survey, which is sent to 6,000 hospitals nationwide, also included two questions asking hospitals whether they gather information on patient race, ethnicity, and primary language; the survey has an 80 percent response rate.
HOSPITAL SURVEY FINDINGS
Who collects race/ethnicity data? A total of 272 of the 1,000 hospitals returned completed surveys during a one-month time period (27% response rate). The majority of hospitals (78% in both the 1,000-hospital survey and AHA Annual Survey) reported collecting race and ethnicity data about patients. The survey indicated that teaching hospitals, urban hospitals, and hospitals in states with a mandate to collect race/ethnicity data are significantly more likely to collect such data about patients. However, only 50 percent of respondents from the 22 states that have a mandate to collect such data were actually aware of the mandate.
How is it collected and why? Fifty-six percent of hospitals that collect data indicated that more than one unit or clinic within the hospital collects data about patients. In most cases, the primary source of information about race/ethnicity is the patient or an admitting clerk obtaining information from the patient directly. However, 51 percent of those hospitals also reported that admitting clerks determined race/ethnicity based on observation. Most hospitals collect race and ethnicity data because it is required by law or regulation (42%) while 29 percent recognize the benefits of data collection and 22 percent use it for quality improvement purposes.
Eighty-six percent of hospitals indicated that they provide specific categories for patients or guardians to check off when data on race and ethnicity are collected, and 13 percent reported collecting the information using a “fill in the blank” open-ended question. None of the broad, standard U.S. Census categories used to specify race or ethnicity, i.e., white, black, Hispanic, Asian, Native American, and Alaska Native, were used by 100 percent of the hospitals. A number of narrower, “fine-grained” categories were used by up to 10 percent of the hospitals. These two observations suggest that hospitals did some significant tailoring of the standard U.S. Census categories to adjust to local circumstances.
Barriers and concerns. Among hospitals that collect data on race/ethnicity, 70 percent did not see any drawbacks to collecting the data. Drawbacks reported by the remaining 30 percent included: discomfort on the part of the registrar or admitting clerk asking the patient for the information; problems associated with the accuracy of the data collected; a sense that patients might be insulted or offended, or resist answering questions about their race and ethnicity; patients often did not “fit” the categories that were given; a fear that data may not be kept confidential; and the possibility that collecting data on race and ethnicity might be used to profile patients and discriminate in the provision of care.
SITE VISIT FINDINGS
Synthesis of the site visit findings confirms many of the findings from the survey and indicates that while there is a theoretical commitment to collecting race/ethnicity/primary language information and a basic understanding of its importance, operationally there are not consistent policies and practices to make it happen.
The site visit hospitals indicated that they collect data to understand the communities they serve; for grant applications; to match their workforce to the communities they serve; to provide certain donors with information about the patient mix; for targeting quality of care initiatives; for contractual compliance obligations, especially with government contracts (Medicare, Medicaid); and for the provision of interpreter services. Barriers to data collection include resource limitations, uncertainty about which racial/ethnic categorization system to use, negative perceptions of patients as to why data are collected, language and cultural barriers, lack of staff training, doubts as to the validity and reliability of the data, perceived legal barriers, and system or organizational barriers. Facilitators of data collection include developing educational programs and training for staff about the importance of collecting this information, the use of self-report by patients to improve the validity and reliability of the data, leadership support, and regulatory measures.
From the results of the surveys and site visits, it is clear that the collection of data on patients' race, ethnicity, and primary language is not standardized within or among the hospitals surveyed and visited and that such collection must be standardized in order to be effective. We offer the following recommendations to achieve this goal:
- Hospitals should standardize who provides information. Patients or their caretakers are more likely to provide accurate information about patients' race, ethnicity, and language than an admitting clerk or health care provider based on observation.
- Hospitals should standardize when data are collected. Collection of data on patients' race, ethnicity, and language upon admission or patient registration will ensure that appropriate fields are completed at the time a patient begins treatment at the hospital.
- Hospitals should standardize which racial and ethnic categories are used. If hospitals are going to use categories, then the Office of Management and Budget (OMB) categories should be used, which would allow for use of standard racial and ethnic categories by all hospitals (see Appendix 3). At the same time, hospitals can use fine-grained categories of Hispanic or Asian groups, for example, that could then expand to broader U.S. Census categories as needed.
- Hospitals should standardize how data are stored. Race, ethnicity, and language data should be stored in a standard format that is compatible across hospitals and health systems. Many of the newer data systems used by hospitals have separate fields for race, ethnicity, and primary language. The data systems may allow for export and import and merging with clinical data files.
- Hospitals should standardize their responses to patients' concerns. Patients' concerns about the ways in which data on race, ethnicity, and language will be used should be addressed prior to collecting the information. There should be a uniform rationale offered to all patients before asking them to identify their racial/ethnic background.
Collection and reporting of data on patients' race and ethnicity are critical if hospitals and other private health organizations want to engage as active partners in improving overall quality of care and reducing racial and ethnic disparities. The availability of accurate and timely data on health care access and utilization by patients' race, ethnicity, and primary language will contribute to increased awareness of racial and ethnic disparities in health, identification of appropriate target populations for interventions to improve quality of care, and development of programs and strategies to eliminate disparities. It also will facilitate monitoring and evaluation of the effects of interventions, and ultimately provide the answer to the following questions: “For whom are we developing initiatives and are these initiatives appropriate for these populations?”
To accomplish the overarching goals of improving quality and reducing disparities, it is imperative that the leadership of hospitals and health systems be supportive and involved; invest in staff training at all levels; ask patients to self-identify their race, ethnicity, and primary language, and ensure that data collected are valid and reliable through constant monitoring and evaluation.
The development of a framework to collect information on patient race, ethnicity, and primary language is a first step and lays the foundation in a long-term effort to improve quality of care and reduce disparities. Consortium members, along with a National Advisory Panel appointed by HRET, have been working to develop such a framework. Once a framework is agreed upon, a set of clinical conditions and a core set of indicators to track over time will be selected. By linking clinical information with information about patients' race, ethnicity, and primary language, consortium members will track the care process and where it breaks down, or has the potential to break down. In addition, they will develop interventions and initiatives to improve the care process for various population groups.