Since the Civil Rights Act went into effect 50 years ago, hospitals and healthcare organizations have been legally allowed to collect patient information about race, ethnicity, and spoken language. Under the Affordable Care Act passed in 2010, federally funded health and healthcare programs, as well as population surveys, are required to enhance the collection of race, ethnicity, and primary language data (among other characteristics).
Various resources, guidelines, and tools exist to assist healthcare professionals in collecting this data (see links below), including the Office of Management and Budget’s Race and Ethnic Standards for Federal Statistics and Administrative Reporting. As Armada and Hubbard discuss in “Diversity in Healthcare: Time to Get Real!,” hospitals that collect such patient population data can assess quality of care, health outcomes, patient satisfaction, and utilization of health services according to racial and ethnic groups. But Armada and Hubbard also address the difficulties and drawbacks to collecting data on race and ethnicity, such as accuracy of data, racial profiling, discrimination, discomfort about asking for patient information, patient fear of confidentiality, and potential to offend a patient.
Despite difficulties and drawbacks, the collection of data on race and ethnicity at institutional levels has clear intentions. When it comes to case reports, however, is there medical bearing for presenting such data? In a 2010 Academic Medicine article, Acquaviva and Mintz question such relevance, making the case that data on race are meaningless because race is a social construct. They cite Caldwell and Popenoe’s 1995 Annals of Internal Medicine assertion that ethnic differences, rather than racial distinctions, “more accurately convey information potentially relevant to a particular case.” Other related reads below further address the controversy.
Acquaviva and Mintz hold that physicians should be taught, among other practices, to “refrain from recording race and ethnicity in patient histories or reporting patient race or ethnicity in a case presentation unless there is a clear, compelling, evidence-based reason for doing so.” If data about race and ethnicity are required, Acquaviva and Mintz state what should be documented: “how data were collected (clinician’s observation versus patient’s self-report), how the question was structured (multiple choice vs open ended), how race was operationally defined in terms of the categories listed, and the presence or absence of the option to select more than one category.”
- The Robert Wood Johnson Foundation’s Aligning Forces for Quality efforts to standardize patient race, ethnicity and language data collection.
- The American Hospital Association’s efforts to eliminate racial and ethnic healthcare disparities.
- Data Collection Standards for Race, Ethnicity, Primary Language, Sex, and Disability Status via the Office of Minority Health within the U.S. Department of Health and Human Services.
- The Health Research and Educational Trust’s Disparities Toolkit.
- National Institutes of Health FAQ on Reporting Race and Ethnicity Data.
- Williams HC. Have You Ever Seen an Asian/Pacific Islander? Arch Dermatol.
- Burchard, EG. Medical Research: Missing Patients. Nature.
- Witzig, R. The Medicalization of Race: Scientific Legitimization of a Flawed Social Construct. Ann Intern Med.