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Collecting and Using Race, Ethnicity and Language Data

A white paper with recommendations from the Commission to End Health Care Disparities

Health care disparities are differences in medical care that are not due to differing clinical needs, patient preferences or the appropriateness of the intervention. Disparities in health care for racial and ethnic minorities in the United States are long-standing, well-documented and have complex origins, both historic and contemporary.

This report on collecting demographic data in ambulatory practices is based on the fundamental proposition that to eliminate disparities in care one must first be able to detect them. Detecting disparities requires three steps:

  1. collect valid and reliable data on the demographic characteristics of patients receiving care,
  2. collect valid and reliable data on the quality of care delivered, and then
  3. stratify the quality data by the relevant demographic subgroups.

Research shows that most practitioners do not collect these data, or they do so in non-systematic and unreliable ways. Among those who do collect these data, very few use them to help address disparities.

This report therefore focuses primarily on step one, though each of the three steps are addressed in the commission’s recommendations. A key motivation for this report, however, is that our research suggests some physicians and practice managers might choose not to collect patient demographic data because they simply do not see the value in doing so.

In this regard, the Commission to End Health Care Disparities believes that demographic data are worth collecting only if they are used to help physicians and other health professionals achieve practical, applied goals. This report details and provides examples of several activities that are improved with accurate demographic data, and how these data can directly and substantively benefit ambulatory practices. These activities include optimizing practice resources to improve quality, improving the data used in pay for performance incentive programs and competing in a rapidly changing market, as well as ensuring equity and eliminating disparities.

Finally, the report provides a set of detailed recommendations for collecting and using patient demographic data in the ambulatory setting. These recommendations are intended to guide not only physicians and health professionals but also vendors of electronic health record (EHR) systems, policymakers, purchasers, hospitals, health plans and others.

Full text

Download a copy of the white paper.