health care fields. The panel believes very strongly that social and economic factors as well as language and acculturation factors play an important role in understanding racial and ethnic disparities in health and health care, and therefore considers the collection of measures of these concepts just as important as measures of race and ethnicity. Chapter 2 sets the stage by briefly reviewing some of the literature on such disparities, citing examples of disparities, and making the case for the importance of collecting data to monitor and understand them and to develop interventions to eliminate them. Chapter 3 reviews measures of race and ethnicity and recent regulations governing the collection of these data. The chapter also briefly reviews measures of socioeconomic position, language, and acculturation that are used to understand the relationship between health and these constructs.
The remaining chapters of the report review current practices in the collection of data on race, ethnicity, socioeconomic position (SEP), and language and acculturation in the health care field, highlight weaknesses, and recommend improvements. The discussion is organized by the source of the data—federal, state, and private-sector sources. There is occasional overlap in this partition, as some data generated by private-sector entities are collected and organized by states, sometimes with federal funding support. Recommendations for improved data collection are given in each of the last three chapters. In making these recommendations, the panel did not consider specific assessments of the cost of improved data collection but did broadly consider the costs of data collection among different types of data collection systems.
The primary focus of the panel was on data collection systems within DHHS, over which the department has the most control. Chapter 4 reviews data collected by DHHS. The panel also reviewed data collected by states and by private sector entities. Both state health departments and private sector entities have roles to play in the collection of data for research on disparities. States are responsible for the collection and maintenance of a number of data systems in health and health care—many of which are then forwarded to DHHS for use on a national level (e.g., vital records and hospital discharge abstracts). Chapter 5 reviews data collected by state governments. Private entities also collect data relevant for researching disparities. These records of diagnoses, treatments, and insurance enrollments and claims are especially important sources of information on health care. Some of these records are the basis of federal and state-based data collection systems. Although outside of DHHS and state health agencies, these privately based records are an important component of data systems needed for the federal government and for state governments to monitor the health of their respective populations. Chapter 6 reviews data collected by private sector organizations.