Federal efforts to collect health care data, including data on people with disabilities, are changing. These changes could ultimately bring improvements in how health care is delivered.
The federal Department of Health and Human Services released final standards Oct. 31 to measure race, ethnicity, sex, primary language, and disability status more consistently. This will improve the department’s ability to highlight disparities in health status and target interventions to reduce these disparities.
“It is our job to get a better understanding of why disparities occur and how to eliminate them. Improving the breadth and quality of our data collection and analysis on key areas, like race, ethnicity, sex, primary language and disability status, is critical to better understanding who we are serving,” Secretary Kathleen Sebelius said.
“Through these new standards, we are providing a new set of powerful tools to help us achieve our vision of a nation free of disparities in health and health care.”
“Many racial and ethnic minorities, people with limited English proficiency, people with disabilities, and other populations face unique health challenges, often have reduced access to health care and often pay the price with poorer health,” said Garth Graham, M.D., MPH, HHS deputy assistant secretary for minority health. “Today we are implementing an important provision of the Affordable Care Act that reinforces our commitment to reducing these health disparities. These new standards will help us carry forward the HHS Action Plan to Reduce Racial and Ethnic Health Disparities and our work to address disparities in people with disabilities as well.”
The Affordable Care Act requires new standards for the collection and reporting of health care information based on race, ethnicity, sex, and primary language. Making data standards consistent will help identify the significant health differences that often exist between and within ethnic groups, particularly among Asian, Hispanic/Latino and Pacific Islander populations.
For example, a study showed that the diabetes-related mortality rate for Mexican Americans (251 per 100 000) and Puerto Ricans (204 deaths per 100 000) was twice as high as the diabetes-related mortality rate for Cuban Americans (101 deaths per 100 000). However, this informa tion would have remained unknown if only the umbrella terms of “Hispanic” or “Latino” had been used.
By adding Mexican American and Chicano/a, Puerto Rican, Cuban, and Other Hispanic Latino/a or Spanish origin as explicit categories required on all HHS-sponsored health surveys, officials can better capture the individual ethnic group challenges that are often found within minority populations. This specificity allows for better measurements and better ways to track health differences in these populations and target interventions appropriately.
The new data collection requirements also will improve researchers’ ability to consistently monitor more dimensions of health disparities among people with disabilities. Collection of all data will take place under HHS’ longstanding, strict commitment to protecting privacy.
The standards, effective upon publication after accepting comments on proposed standards, apply to health surveys sponsored by HHS, where respondents either self-report information or a knowledgeable person responds for all members of a household. The standards will be used in all new surveys and at the time of major revisions to current surveys. For more information on the final data standards, visit minorityhealth.hhs.gov/section4302
