In this chapter, we describe some of these private-sector data systems and their approach to the collection of data on race, ethnicity, socioeconomic position (SEP), and language. Private-sector data collections do not fall under the same regulatory framework as federal and state-based data collection, and in this chapter we briefly review the legal environment for private-sector collection of racial and ethnic data. We then review which data on race, ethnicity, SEP, and language are collected by health insurers, providers and medical groups, and hospitals, and barriers to the collection of these data. The chapter ends with the panel’s conclusions and recommendations for the improvement of these data collection systems. In these recommendations, the panel encourages the Department of Health and Human Services to press for private-sector collection of data on race, ethnicity, socioeconomic position, and language use, to exercise leadership in setting standards for the collection of these data, and to develop mechanisms to make data linkages possible. Although these recommendations are made to promote data collection for statistical and research purposes in order to better understand and design programs to eliminate disparities in health and health care, the chapter also highlights how such data could be used by those organizations collecting the data to improve programs, services, outreach and treatment for individuals and groups to monitor and reduce disparities.


We define private-sector data systems as those that collect data as part of a patient encounter with a medical professional at a hospital, clinic, nursing home, or medical group practice,1 as well as those that collect data as part of private health insurance enrollment or a claims submission process (not including enrollment or claims data from Medicare, Medicaid, or State Children’s Health Insurance Program [SCHIP]). In general, these data come from three sources: hospitals and nursing homes, health insurers,2 and private physicians and physician medical groups. It should be noted that these private record collection systems sometimes share data on a limited basis with states and with federal data systems; for example, the National Hospital Discharge Survey (NHDS), which was discussed in Chapter 4, is a federally sponsored survey of records collected by hospitals on


We do not include records of encounters at Veterans Health Administration or VA hospitals in this chapter, although data on veterans’ use of health care services have been used to study racial and ethnic disparities in health care (for example, Jha et al., 2001). We also do not include records of patient encounters at Indian Health Service centers (see Chapter 4).


Our definition of health insurers encompasses indemnity health insurers, managed care plans, health plans, and health maintenance organizations (HMOs).

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