Advancing Health Care Equity through Improved Data Collection

Author(s): Joel S. Weissman, PhD; Romana Hasnain-Wynia, PhD New England Journal of Medicine, 2011

New England Journal

Health care reform's promise will not be realized if it fails to reduce racial and ethnic disparities in care. The first step toward monitoring, identifying, and targeting the underlying causes of disparities is for health care organizations to collect and analyze data that adequately describe their populations. No single entity has the capacity to analyze disparities for the entire country, and one of the largest and most comprehensive sources of utilization — health insurance claims — lacks basic demographic data on the race and ethnic background of enrollees. It is therefore worthwhile to examine the status of data collection and future options.

Aside from vital statistics, health data including patients' race or ethnic background are collected haphazardly. For example, most U.S. hospitals collect data on patients' race or ethnic group, but few record this information systematically, and of course only a small fraction of people are hospitalized in any given year. Many more people visit doctors, but very few physician practices collect race and ethnic data routinely.

Recent national legislation may lead to some improvements. The section on “meaningful use” in the Health Information Technology for Economic and Clinical Health (HITECH) Act requires physicians to record the race or ethnic background for at least half their patients in order to be eligible for incentives related to implementing electronic health records. Eventually, health information exchanges may be able to transmit this information to insurance companies, but it will be years before such exchanges are operational, and no data will be collected from people who don't use health care services. The Affordable Care Act (ACA) also includes provisions requiring the relevant data to be collected, but only in certain federal programs such as population surveys, Medicaid, and the Children's Health Insurance Program.

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