Collecting Race, Ethnicity, and Language Data: A How-To Guide

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With Commonwealth Fund support, the Health Research and Educational Trust (HRET) created a Web-based toolkit in 2005 for collection of race, ethnicity, and primary language information. It can be used as a practical guide by health plans, hospitals, and other providers for collecting information from patients that meets regulatory and local community demands. Given that many states now mandate the collection of race and ethnicity data, the need for standardization in data collection has become increasingly urgent. In addition, the data can be used by health care organizations to monitor health care delivery and quality of care by linking to clinical measures and targeting appropriate interventions to specific groups. An updated and free version of the toolkit supported by HRET and the American Hospital Association, was made available in January 2008.

The Issue: A critical barrier to eliminating racial and ethnic health 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. Current federal and state data collection efforts vary, and many health plans, health systems, and hospitals do not collect any data on patients' race, ethnicity, and primary language.

Type of Innovation: Quality monitoring and reporting

Organization: Health Research and Educational Trust

Date of Implementation: February 2005. Updated January 2008.

Target Populations: Hospitals, health systems, community health centers, and health plans

Intervention: The toolkit is designed to answer users' questions about race, ethnicity, and primary language data collection. The HRET tool takes hospitals and other health care organizations through each step of the collection process, from assessing existing approaches to storing the data in a format that is compatible with outside health systems. The toolkit recommends that users collect race and ethnicity information directly from patients, using an open-ended format. This allows patients to use their own words and define up to four racial/ethnic categories. For those organizations not able to do so, the toolkit provides guidelines for collecting racial and ethnic data using Office of Management and Budget or Centers for Disease Control categories.

No matter the method, the toolkit recommends that patients be given a clear rationale for why collecting such information is important. The toolkit includes resources to help users make this case, including staff training presentations that outline how best to present this sensitive issue to patients and how to address any legal and privacy concerns. The toolkit also provides guidance for how to make the process efficient and cost-effective. It provides coding instructions so the information collected is as uniform and useful as possible.

The toolkit is available at www.hretdisparities.org/.

For more information
Contact: Romana Hasnain-Wynia, Ph.D., Vice President, Research
Principal Investigator, Developing a Uniform Framework for Collecting Patient Race, Ethnicity, and Primary Language Data
Health Research and Educational Trust
(312) 422-2643
rhasnain@aha.org