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Few aspects of racial injustice and inequity in the United States are better documented than racial inequity in health care. Nearly 70 years after Brown v Board of Education, race remains a powerful predictor of who gets what types of health care, in what settings, and at what level of quality. Extensive research has documented the vast scope and depth of the problem, while a virtual deluge of specialized studies reveals inequities within specific care settings, frequently in exhaustive detail. This body of evidence demonstrates that racial disparities exist even when other important factors are considered, such as family income and the broader conditions under which Americans are born, grow up, go to school, live, work, and age. The demographics of American poverty show its disproportionate impact on people of color. But the impact of race transcends socioeconomic measures. This fact perhaps was most searingly shown in a landmark study by Schulman and colleagues that examined the relationship of race to clinical judgment itself and found that controlling for other key factors, race and gender both influenced how physicians treated chest pain.
National reports and specialized studies are undoubtedly invaluable, but they are not substitutes for real-time information grounded in actual practice. If – as it should be – the goal is not simply to document the existence of health care inequities but to measure it in actual practice and do something about it, then the information collection status quo simply won’t do. Neither public nor private policymakers can place central reliance on periodic studies and surveys disconnected from the immediacy of the health care experience itself and whose results often are made known years after the fact. For real change to occur, we need more than periodic national surveys or isolated, localized studies of specific topics or care settings of interest to particular funders undertaken, at times, after enough anecdotal evidence has piled up to suggest that a problem exists.
To truly make a difference in the here and now, the nation needs continuous, current information specific to all types of health care and health care settings, whether routine pediatric care or the most advanced procedures in the most highly specialized settings. We need to know who gets what. In the case of preventive and primary care, we need to know whether people are receiving recommended services, at the right time, and in the right settings. In the case of more advanced care, we need to know whether care is available at the appropriate stage of illness, what the care consists of, what a patient’s status is at the time of discharge, and what recovery looks like. All health care providers need this type of evidence about their own practices, since it is so difficult to have a panoramic sense of how patients are faring in the aggregate. Payers need this information to understand whether their payment practices are producing high-quality, equitable results. Public and private policymakers need the information to fashion solutions. This type of information must be continually available, reliably produced, and regularly collected and examined, not only as a matter of equal justice, but as one of transparency and quality. If health care providers want all Americans to trust the system, then they must earn it – a fact driven home to an extraordinary degree by the COVID-19 pandemic, which has produced extensively documented patterns of health care inequity, and whose vaccination experience underscores the trust problem.
To put it mildly, adding race, ethnicity, language, and other demographic and individual measures to the federal government’s standard physician, hospital, and other billing forms is not a new issue. Indeed, the issue has attracted a broad array of advocates. Federal advisory panels, such as the Reagan Administration’s 1985 Secretary’s Task Force on Black and Minority Health, have called for this type of improvement in basic data collection. Moreover, equal justice advocates have (unsuccessfully) sought to establish the routine collection of patient demographic information as a basic part of the HHS Secretary’s civil rights oversight responsibilities under Title VI of the 1964 Civil Rights Act, which prohibits discrimination on the basis of race, color, or national origin.1
The Affordable Care Act arguably establishes a federal policy expectation that race and ethnicity will become a routine matter of health care quality measurement in all practice settings. Section 1557 significantly expands the reach of Title VI (as well as civil rights laws barring health care discrimination based on sex, age, and disability), and includes within its reach all elements of the system – providers and payers alike – any part of which receives federal funding. In a nation in which government funding is so intertwined with health care, the reach of 1557 is virtually total. Furthermore, § 4302 of the ACA amends the Public Health Service Act to require the HHS Secretary to ensure that “any federally conducted or supported health care or public health program . . . collects and reports to the extent practicable data on race, ethnicity, sex, primary language, and disability status for applicants, recipients, or participants.” This uncommonly broad language could be read to include all federal programs, including federal insurers and federal subsidy systems used to purchase insurance that, in turn, helps support providers subject to 1557’s commands.
Perhaps the time has finally arrived when federal officials will take the bull by the horn and revise standard federal billing forms to include race and ethnicity, along with primary language, sex, and disability. Indeed, one of President Biden’s first actions was to sign an Executive Order on Advancing Racial Equity and Support for Underserved Communities. We simply cannot get there without information, something the federal Office of Management and Budget recently recognized in its notice soliciting recommendations from the public on policies and actions that can be taken to ensure equity in federal programs.2
In a national health care system rapidly approaching $3 trillion dollars in annual spending, it is vitally important to know how it is performing for all Americans, and to act accordingly on that knowledge. The remedies will be complex, but we cannot robustly move forward without the right evidence.
1. Madison-Hughes v Shalala, 80 F. 3d 1121 (6th Cir., 1996) 2. 86 Fed. Reg. 24029 (May 5, 2021).
Sara Rosenbaum is the Harold and Jane Hirsh Professor of Health Law and Policy and founding chair of the Department of Health Policy at the George Washington University School of Public Health and Health Services. She also holds professorships in the Schools of Law and Medicine and Health Sciences. A graduate of Wesleyan University and Boston University Law School, Rosenbaum has devoted her career to issues of health justice for populations who are medically underserved as a result of race, poverty, disability, or cultural exclusion. Between 1993 and 1994, Rosenbaum worked for President Clinton, where she directed the drafting of the Health Security Act and designed the Vaccines for Children program, which today provides near-universal immunization coverage to low-income and medically underserved children. Rosenbaum is the leading author of Law and the American Health Care System (Foundation Press, 2012) and has received many national awards for her work in public health policy. She is past chair of AcademyHealth and a member of the Institute of Medicine. Rosenbaum also has served on the CDC Director’s Advisory Committee and as a Commissioner on the Congressional Medicaid and CHIP Payment and Access Commission (MACPAC), which she chaired from January 2016 through the expiration of her term in April, 2017.
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