Fight for stronger federal standards for demographic data collection

Alert Source: 
CPEHN (California Pan-Ethnic Health Network)
Jul 19 2011 - 9:03am

Action Alert

As part of national health care reform, the U.S. Department of Health and Human Services (HHS) has proposed standards for the collection of data on race, ethnicity, primary language, gender, and disability status in all federally sponsored and funded health surveys. HHS is also proposing developing future standards for the collection of data on sexual orientation and gender identity.

These standards will play a critical role for how federal, state, and local governments will collect demographic data and use it to address health disparities. However, the draft standards being proposed do not go far enough to recognize the diversity of our communities and the need to collect language preference to provide translated materials. Please submit your comments for stronger standards. Comments must be received by August 1.

Suggested comments:

  • While we believe this is a positive first step in addressing and identifying persistent disparities, for the data to be most effective, we urge HHS to strengthen these standards by including all of the recommendations of the 2009 Institute of Medicine Report, "Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement." Specifically:
    • HHS should include additional “granular ethnicity” categories for all races by adopting one of the comprehensive lists for categorizing race and ethnicity data included in the Institute of Medicine’s 2009 report, Appendix E.
    • When using the proposed data standard for primary language, Limited English Proficient (LEP) should be defined as “a person who speaks English less than very well.”
    • HHS should include questions about spoken and written language needs and should adopt the comprehensive, standardized set of spoken language categories and coding included in the Institute of Medicine’s 2009 report, Appendix I.
  • HHS should start collecting data to measure the impact of literacy level on health, such as including a question with regards to the highest level of education completed.
  • HHS should apply the proposed standards not only to health surveys but to all data collection points, including electronic health records.

You can submit comments in the following ways:

  1. Electronically. You may submit comments to Enter docket ID number HHS-OMH-2011-0013-0001 in the "Enter Keyword or ID" field and click on "Search." On the next web page, click on the "Submit a Comment" action and follow the instructions.
  2. By regular mail. You may mail written comments to: Office of Minority Health Resource Center, Attention: Affordable Care Act Section 4302 Data Standard Comments, 1101 Wootton Parkway, Suite 650, Rockville, MD 20852.

Tell us how you took action, email Cary Sanders at