One of the most troubling aspects of the U.S. health care system is the existence, and extent, of racial and ethnic health disparities. Research has amply documented that members of racial and ethnic minority groups receive fewer health care services and lower quality health care than non-minority patients (see, for example, the rather damning portrait drawn by the Institute of Medicine’s 2003 study titled “Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care”). These disparities remain even when insurance status, socioeconomic status, and other important factors are controlled for in scientific studies.
There are many likely causes of race- and ethnicity-based health disparities. Among them: patient-level variables such as cultural preferences, mistrust of health care providers, and degrees of knowledge; system-level factors such as the geographic availability of health care providers, the use of managed care in publicly sponsored health care programs, and a general lack of institutional funding for language interpretation and translation services; and provider-level variables such as prejudice, stereotyping, and clinical uncertainty when treating minority patients.
Yet for all the evidence showing the existence of racial and ethnic health disparities, government agencies, health care providers, and health plans and insurers do not routinely collect data pertaining to patients’ race, ethnicity, and primary language. The refusal to collect this data oftentimes rests on the assumption that it would be unlawful to do so—even though no federal and few state laws prohibit it. In fact, Title VI of the federal Civil Rights Act of 1964, which broadly prohibits discrimination on the basis of race, ethnicity, or national origin by federally funded entities and programs, anticipates (though does not mandate) such data collection. According to many experts, the lack of patient race, ethnicity, and primary language data is one of the largest barriers to improving health care quality for minority patients.
Section 10334 of the new federal health reform law (the Patient Protection and Affordable Care Act) should improve matters. The law requires the U.S. Department of Health and Human Services (HHS) to ensure that any “ongoing or federally conducted or supported health care or public health program, activity, or survey” collects and reports 1) data on the race, ethnicity, and primary language of applicants, recipients, or participants; 2) data at the smallest geographic level if such data can be aggregated; 3) sufficient data to generate statistically reliable estimates according to targeted categories; and 4) any other demographic data as deemed appropriate by the Secretary regarding health disparities. Beyond data collection, the law reorganizes federal oversight within HHS of activities aimed at reducing disparities in health and health care, establishes Offices of Minority Health within six key HHS agencies, and directs the HHS Secretary to award grants to public and nonprofit private entities in communities of color to improve the health status of racial and ethnic minorities.
Clearly it will take time to measure the effects of these legal changes, and there are several questions raised by the law itself related to, among other things, its relationship to Title VI, how it will be enforced, and how the data collected will guide federal program management and policy development. But the new health reform provisions represent a long-awaited response from the federal government to one of the most enduring, and troubling, concerns in health care.
Health Reform and Racial and Ethnic Health Disparities
One of the most troubling aspects of the U.S. health care system is the existence, and extent, of racial and ethnic health disparities. Research has amply documented that members of racial and ethnic minority groups receive fewer health care services and lower quality health care than non-minority patients (see, for example, the rather damning portrait drawn by the Institute of Medicine’s 2003 study titled “Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care,” available at http://www.nap.edu/openbook.php?isbn=030908265X). These disparities remain even when insurance status, socioeconomic status, and other important factors are controlled for in scientific studies.
There are many likely causes of race- and ethnicity-based health disparities. Among them: patient-level variables such as cultural preferences, mistrust of health care providers, and degrees of knowledge; system-level factors such as the geographic availability of health care providers, the use of managed care in publicly sponsored health care programs, and a general lack of institutional funding for language interpretation and translation services; and provider-level variables such as prejudice, stereotyping, and clinical uncertainty when treating minority patients.
Yet for all the evidence showing the existence of racial and ethnic health disparities, government agencies, health care providers, and health plans and insurers do not routinely collect data pertaining to patients’ race, ethnicity, and primary language. The refusal to collect this data oftentimes rests on the assumption that it would be unlawful to do so—even though no federal and few state laws prohibit it. In fact, Title VI of the federal Civil Rights Act of 1964, which broadly prohibits discrimination on the basis of race, ethnicity, or national origin by federally funded entities and programs, anticipates (though does not mandate) such data collection. According to many experts, the lack of patient race, ethnicity, and primary language data is one of the largest barriers to improving health care quality for minority patients.
Section 10334 of the new federal health reform law (the Patient Protection and Affordable Care Act) should improve matters. The law requires the U.S. Department of Health and Human Services (HHS) to ensure that any “ongoing or federally conducted or supported health care or public health program, activity, or survey” collects and reports 1) data on the race, ethnicity, and primary language of applicants, recipients, or participants; 2) data at the smallest geographic level if such data can be aggregated; 3) sufficient data to generate statistically reliable estimates according to targeted categories; and 4) any other demographic data as deemed appropriate by the Secretary regarding health disparities. Beyond data collection, the law reorganizes federal oversight within HHS of activities aimed at reducing disparities in health and health care, establishes Offices of Minority Health within six key HHS agencies, and directs the HHS Secretary to award grants to public and nonprofit private entities in communities of color to improve the health status of racial and ethnic minorities.
Clearly it will take time to measure the effects of these legal changes, and there are several questions raised by the law itself related to, among other things, its relationship to Title VI, how it will be enforced, and how the data collected will guide federal program management and policy development. But the new health reform provisions represent a long-awaited response from the federal government to one of the most enduring, and troubling, concerns in health care.