IV. Disparities-Specific Provisions
A. Increasing the Visibility of Disparities
One of the fundamental difficulties in minimizing health care disparities is that the problem is invisible. Government agencies, health care providers, health plans, and insurers do not routinely collect race and ethnicity data, even though no federal and few state laws prohibit collection. Although Title VI of the Civil Rights Act of 1964 broadly prohibits discrimination on the basis of race, ethnicity, or national origin by federally funded entities and programs, it does not require data collection; nor does it require that covered entities follow any particular methodology when doing so.
Significant gains in reducing disparities require a much keener awareness of the nature and extent of existing disparities. Collecting data related to racial and ethnic differences in access, outcomes, choice of diagnostic, and treatment alternatives, can help identify potentially discriminatory practices; moreover, whether they are the result of intentional behaviors or unintended but no less harmful biases and practices that result in racial differences in care that are unjustified by patient preferences or clinical need. All health care is local; and the closer to home the disparities data are, the more difficult it is for the public, providers, and policy makers to dismiss the issues they pose as “someone else's problem.” Indeed, a recent survey of cardiologists illustrates this point: 34% of respondents agreed that racial and ethnic disparities exist in care overall in the U.S. healthcare system, and 33% agreed that disparities existed in cardiovascular care; however, only 12% felt disparities existed in their own hospital setting, and even fewer, 5%, thought disparities existed in the care of their own patients.
The ACA takes important first steps to correct the federal government's failure to assume a leadership role on this issue. The legislation requires the HHS Secretary to ensure that, by March 30, 2012, any “federally conducted or supported health care or public health program, activity, or survey . . . collects and reports data on race, ethnicity, sex, primary language, and disability status for applicants, recipients, or participants,” as well as any other demographic data regarding health disparities. The statute does not define “federally conducted or supported health care or public health program, activity or survey,” but the plain language suggests the provision is broad in scope and potentially covers health insurance plans operating within the health exchanges. The legislation further directs the Secretary to evaluate and implement approaches for the collection of Medicaid and SCHIP disparities data related to race, ethnicity, sex, primary language, and disability status. The Secretary must submit a report outlining proposed methodologies to be used for data collection and evaluation as well as recommendations for improving health disparities data collection under Medicaid and CHIP.
1. Ensuring Data Accuracy and Uniformity
An overarching issue is how such data are collected and coded; a race/ethnicity reporting mandate does not necessarily ensure uniform or accurate data. As the health care debate raged in Congress, the Institute of Medicine (IOM) simultaneously studied the standardization issue and released a report that will likely guide the HHS Secretary's efforts. In the report, the IOM recommended: collecting race and ethnicity data using the Office of Management and Budget's recommended race and ethnicity categories; collecting more fine-grained categories of ethnicity; and collecting data on spoken language, including English proficiency and preferred language for medical encounters, by using a standard set of categories. IOM also encouraged the collection of data through self-reporting whenever practicable; self-reporting is generally considered more accurate than observational reporting of race and ethnicity by health care providers.
Last summer, HHS announced new draft standards for collecting and reporting data on race and ethnicity that embraced many of the IOM's recommendations. The proposed rule emphasizes self-identification as the preferred means of obtaining information about an individual's race and ethnicity. The race and ethnicity standards also include fine-grained categories from which racial and ethnic differences in health care and outcomes can be examined in more detail, particularly among Asian, Hispanic/Latino and Pacific Islander populations. Because health disparities have been associated with limited English language proficiency, the draft standards assess degrees of language proficiency on a self-reported basis. At first blush, these proposed rules appear to address many of the uniformity and accuracy concerns. They also represent a huge step forward in unmasking the health care disparities that exist in the Asian American, Native Hawaiian and Pacific Islander communities.
2. Monitoring and Detecting Disparities at the Local Level
Many of the activities that will lead to a tangible reduction in, or elimination of, disparities in care, must be carried out by health care organizations that have responsibility for the health and well-being of defined groups of people--health plans serving defined sets of members, hospitals serving specific communities, and clinics or medical groups serving panels of regular patients. These are the local settings in which the current patterns of racial and ethnic disparities are found; therefore, they are the settings in which change must occur, to alter those patterns.
The collection of racial and ethnicity data by health plans pose a number of special challenges. Most health plans have only sporadic direct contact with enrollees, principally at the time of enrollment. Some states prohibit health insurers from requesting such information from applicants to prevent the possibility of “redlining,” whereby health plans bypass zip codes containing high minority populations. However, these legal restrictions do not apply outside the insurance application process, allowing the collection of race and ethnicity data after enrollment through voluntary participation in disease management programs or questionnaires. Health plans that have attempted to collect race and ethnicity data after enrollment as a way to identify and monitor disparities have had only modest success.
Collection costs may be high, particularly at the beginning. Indeed, some plans have had to coordinate different information systems that serve different regions; others have attempted to bring together departments that address quality of care, marketing, and human resources to address disparities; and many plans face challenges relating to organizational changes such a mergers and acquisitions. Because many health plans experience enrollee turnover and compete in local markets, information sharing between plans has been a challenge. Aetna, one of the early leaders, began collecting data over a decade ago; yet they have self-reported data for only one-third of active members.
Money talks and the ACA provides little to lower collection costs or to assist health plans in developing information systems vital to reducing race-based disparities. Implementing the data collection and reporting requirement may ultimately depend on appropriations by Congress. The legislation specifically prevents data from being collected by covered entities unless specific funding is appropriated for this purpose. However, many federal data collection efforts are funded as components of larger programs or as discretionary funding.
However, one qualification is necessary here. Recent national legislation may lead to some improvements by providing financial incentives to providers. The section on “meaningful use” in the Health Information Technology for Economic and Clinical Health Act requires physicians to record the race or ethnic background for at least half their patients, in order to be eligible for financial incentives related to implementing electronic health records. Eventually, health information exchanges may be able to transmit this information to insurance companies. An HHS advisory group is currently considering including in pending meaningful use requirements measures showing that providers were able to reduce race, ethnic, and other disparities in the health of their patients.
3. Diversifying the Health Care Workforce
Because many minority neighborhoods have a shortage of physicians and less access to medical care, increasing the supply of minority physicians is an intervention that may help to ameliorate access disparities. Physicians of color are much more likely than their white colleagues to locate their practices in areas with large minority populations. In a survey of physicians, researchers found that African-American and Hispanic physicians were five and two times more likely, respectively, than their white peers to practice in communities with high proportions of African-American and Hispanic residents. On average, over half of the patients seen by African-American and Hispanic physicians were members of these clinicians' racial or ethnic group.
Empirical research also suggests that increasing workforce diversity is an intervention that may help to reduce racial and ethnic disparities in the quality of care. As discussed in Part I of this Article, a large of body of research indicates that even when insured at the same levels as whites; patients of color receive fewer clinical services and receive a lower quality of care. At least some of these disparities may result from aspects of the clinical encounter and attitudes, both conscious and unconscious of health care providers. Further, persons of color tend to seek medical care at a higher rate, and are generally more satisfied with the care they receive, when clinicians of the same cultural and racial background provide health care.
The ACA takes steps to increase the representation of underrepresented minorities in the health care workforce by reauthorizing Titles VII and VIII of the Public Health Services Act, which has been successful in increasing racial and ethnic diversity in the health care workforce, improving cultural competence, and encouraging health care providers to practice in medically underserved areas. More specifically, the legislation reauthorizes: Centers for Excellence Programs that target, attract, and retain minority applicants in health professions schools; scholarships for disadvantaged students who commit to work in medically underserved areas; and faculty loan repayment programs that aim to attract and retain minority professors at health professions schools. Under a complicated allocation formula, the federal law makes an additional $12 million available for grants to health professions schools at historically Black colleges and universities It provides that HCBUs must receive preference for mental and behavioral health education and training grants.
However, these programs do not directly address admissions policies and the institutional climate of colleges and universities that have a legacy of being historically white. Similarly, the ACA's workforce diversity provisions fail to address vast inequities in the quality of elementary and secondary school education, particularly in the sciences. While the ACA secures appropriations for modest workforce diversity initiatives through 2014, support for these programs is likely to come under fierce attack by fiscal conservatives and affirmative action foes alike. The continuity of these initiatives will require a strong commitment from congressional leaders, vigorous lobbying by health professions institutions and grassroots activists, as well as an abundance of data that clearly demonstrates their benefits.
B. Health Disparities Research
Research is a vital component of the national strategy to understand, reduce, and eliminate disparities. The research is complex and involves a broad range of biomedical, social, economic, and behavioral issues. Much of the research is conducted or funded by the National Institutes of Health (NIH), which recently declared disparities research to be third among its top five priorities. While research alone will not reduce persistent health disparities, the ACA sustains and enhances NIH disparities research, developing an evidence base that will inform disparity reduction initiatives.
For example, the law elevates the National Center on Minority Health and Health Disparities at the NIH to institute status--the National Institute on Minority Health and Health Disparities. The move authorizes the new institute to plan, coordinate, review and evaluate all minority health and health disparities research activities conducted and supported by the NIH institutes and centers; and it reaffirms the authority of the institute director as the primary federal official with responsibility for coordinating such activities. Among the research priorities for the new institute are the social determinants of health, patient-centered outcomes research; faith-based approaches to health disparities; and improving the participation of health disparity populations in clinical trials.
Health policy experts have identified three major challenges to maximizing the efficacy of health disparities research: coordinating research efforts, translating research into policy and practice, and ensuring racial/ethnic diversity in clinical trials. Of these, recruiting and retaining persons of color in clinical trials may prove to be the most challenging. Although the NIH requires the inclusion of underrepresented minorities in medical research, there continues to be a lack of African American representation in research trials. Further, more than three decades after the shutdown of the notorious Tuskegee Experiment, a team of Johns Hopkins physicians has found that Tuskegee's legacy of Blacks' mistrust of physicians and deep-seated fear of harm from medical research persists; it is largely to blame for keeping African Americans from taking part in clinical trials. In turn, this lack of participation limits the ability of researchers to generalize data from clinical trials to African Americans and may ultimately contribute to the presence of health disparities. Clearly, more works needs to be done in this area.
Finally, NIH health disparities research must focus squarely on discrimination. Much of the current research focuses on physician perception and physician behavior in providing patient care, including the potential role of racial bias in physician decision making. This is important but it is not enough. In addition, health disparities researchers should examine the health care system, broadly defined, to determine whether there are policies and practices in place that have the effect of discriminating again communities of color. For instance, it is important to examine the location decisions of hospitals, nursing homes, and health care organizations. Are there institutional policies, norms, and practices in place that lead to the opening of new care facilities in affluent-majority-white suburbs to the detriment of the health of communities of color? As discussed in Part II, it is also important to examine whether there are policies and practices in place in the process of applying for Medicaid, that have the effect of discriminating against communities of color.
There are many other points in the health care system where disparate impact discrimination can and does occur. Overall, it is important for NIH to create robust and broadly defined research that focuses on the role of discrimination at each of these points.
