HHS Publishes Final Standards for Data Collection

On October 31, 2011, the department of Health and Human Services (HHS) published final standards for collecting data about race, ethnicity, sex, primary language and disability status. Under health care reform, all health surveys sponsored by HHS must address disability status. People with disabilities have poorer health and poorer health outcomes than others, and a goal of the Accountable Care Act is to find out more about contributing factors.

The final data standards apply to data collection in all HHS health population surveys where respondents either self-report information or a knowledgeable person responds for all members of a household. These questions currently appear in the National Health Interview Survey, and in the Census Bureau’s American Community Survey and Current Population Survey. Eventually, all health surveys sponsored by any federal agency and all federally conducted or supported health care or public health programs, activities and surveys that collect and report data will use these questions.

The six-item set of questions used by the American Community Survey and some other major federal surveys to characterize functional disability is the minimum standard for population survey data on disability status. The question set defines disability from a functional perspective such that disparities between the “disabled” and “nondisabled” population can be monitored. The questions underwent intensive cognitive and field testing, which showed that all six questions must be used together to obtain a meaningful measure of disability.

These standards constitute a minimum. Agencies are free to collect as much additional data as they like as long as the data can be aggregated back to the minimum standard, i.e., disability. A federal interagency committee developed the question set, which conceptually reflects the International Classification of Functioning, Disability and Health. Some of the disability questions have age thresholds. Most major federal data collection systems have adopted the question set.

Survey questions

1. Are you deaf or do you have serious difficulty hearing?
a.____Yes
b.____No

2. Are you blind or do you have serious difficulty seeing, even when wearing glasses?
a.____Yes
b.____No

3. Because of a physical, mental or emotional condition, do you have serious difficulty concentrating, remembering, or making decisions? (5 years old or older)
a.____Yes
b.____No

4. Do you have serious difficulty walking or climbing stairs? (5 years old or older)
a.____Yes
b.____No

5. Do you have difficulty dressing or bathing? (5 years old or older)
a.____Yes
b.____No

6. Because of a physical, mental or emotional condition, do you have difficulty doing errands alone such as visiting a doctor’s office or shopping? (15 years old or older)
a.____Yes
b.____No

For more information from the HHS on these questions, please consult the fact sheet found http://minorityhealth.hhs.gov