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Reducing Health Disparities with Improved Data Collection:
New Refined Data Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status

After a systematic review and development process, the U.S. Department of Health and Human Services (HHS) has adopted new data standards for race, ethnicity, sex, primary language and disability status.

Identifying disparities and effectively targeting and monitoring efforts to reduce them has been limited by a lack of specificity, uniformity and quality in data collection and reporting procedures. Consistent methods for collecting and reporting health data will help us better characterize and compare the nature of health problems in underserved populations.

The Affordable Care Act and Health Disparities Data Collection

Many racial and ethnic minorities, people with limited English proficiency, people with disabilities, lesbian, gay, bisexual and transgender communities and other commonly underserved populations face unique health challenges, often have reduced access to health care and insurance and often pay the price with poorer health throughout their lives.

According to recent analyses of progress on Healthy People 2010 objectives, leading health indicators have demonstrated little progress in reducing disparities over the past decade. A recent Institute of Medicine report emphasizes that inadequate data on race, ethnicity, and language lowers the likelihood of effective actions to address health disparities.

The Affordable Care Act improves health data collection and analysis strategy on disparities. Section 4302 of the Affordable Care Act contains provisions to strengthen federal data collection efforts by requiring that all health surveys sponsored by HHS include standardized information on race, ethnicity, sex, primary language and disability status. The law also provides HHS the opportunity to collect additional demographic data to further improve our understanding of health care disparities.

In June, HHS announced a progression plan to begin collecting health data on lesbian, gay, bisexual and transgender (LGBT) populations. HHS is continuing to implement this national plan.

Why These New Standards Matter

The Affordable Care Act requires new standards to improve the collection and reporting of health care information based on race, ethnicity, sex, and primary language. Streamlining data standards will help us improve the ability to monitor health disparities among people with disabilities and better identify the significant health differences that often exist between and within ethnic groups.

For example, 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) i. However, this information would remain unknown without more specific dimensions in data collection. The umbrella terms of Hispanic or Latino do not capture the individual ethnic group challenges that are often found within minority populations. This specificity allows us to better measure and track health differences in these populations and target interventions appropriately.

Developing New Data Standards for Identifying Health Disparities

Data standards were developed using the following criteria:

  1. Standards would be evidence-based and demonstrated to have worked well in practice for national survey data collection.
  2. Standards would represent a minimum data standard, with agencies permitted to collect as much additional detail as desired, provided that the additional detail could be aggregated back to the minimum standard.
  3. Standards mandated by Office of Management and Budget (OMB) would serve as the starting point for any data standard.
  4. Standards would apply to HHS-sponsored population surveys in which person-level data is collected via either self-report or from a respondent who serves as a knowledgeable household representative.

After the release of proposed data standards in June, comments from the public were sought, reviewed and considered in making recommendations for final data standards. The main theme reflected in public comments related to suggesting additional data categories beyond the minimum standards or adding entirely new sets of questions and measures.

Consistent with the discussion in the Federal Register Notice, HHS continues to emphasize that the standards proposed are minimum data standards, not maximum. Agencies may collect additional categories within the minimum standard categories as long as the data can be aggregated back to the minimum standard, and may collect as much additional data as needed, e.g., disability, as long as the standard data item is included. The new standards include two changes. Respondents may select more than one ethnicity. And, the term "Chicano" was changed to "Chicano/a," and the term "Latino" was changed to "Latino/a."

New Data Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status

The final data standards, listed below, apply to the collection of data in HHS-sponsored population surveys where person-level data is collected via either self-report or from a respondent who serves as a knowledgeable household representative. Collection of the data will take place under longstanding, strict, statutory confidentiality protections governing HHS surveys. HHS will begin implementation of these new data standards for new surveys and at the next major revision for existing surveys.

Race and Ethnicity
The data standards for race and ethnicity build upon the OMB standard, adding the type of granularity for Asian and Latino populations that is used in the American Community Survey (ACS) and that was used in the 2000 and 2010 Decennial Census. The data standard can be viewed here.

The data standard for sex is male and female. The survey item can be viewed here.

Primary Language
English proficiency is the minimum data standard for the primary language data standard. The recommended question is used in the ACS. The data standard can be viewed here.

Agencies would have the option of collecting data on the specific language spoken, using the questions used in the ACS. The data standard can be viewed here.

Disability Status
The six-item set of questions used by ACS and other major federal surveys to characterize functional disability is the minimum standard for collecting population survey data on disability status. The question set was developed by a federal interagency committee and reflects how disability is conceptualized consistent with the International Classification of Functioning, Disability, and Health. The question set went through several rounds of cognitive testing and has been adopted in most major federal data collection systems. The data standard can be viewed here.

A Commitment to Reducing Health Disparities

The Obama Administration and HHS recognize the importance of a broad approach to addressing the health and well-being of our communities. HHS continues to make significant progress toward improving health and health care for underserved populations, such as implementing the Affordable Care Act, the law helping to improve access to care for all Americans. For people with disabilities, important advances are being made to ensure that diagnostic equipment like imaging devices and examination tables are built consistent with new agency standards aimed at improving access and usability for people with certain disabilities.

In addition, HHS supports Head Start and Child Care programs to ensure low-income children have the support and education they need to adopt nutritious diets and active lifestyles. The Obama Administration and HHS are working to ensure every American-regardless of race, ethnicity, age, disability status, gender identity, or sexual orientation-has the opportunity to live their healthiest life possible.

iSmith CAS, Barnett E. Diabetes-related mortality among Mexican Americans, Puerto Ricans, and Cuban Americans in the United States. Rev Panam Salud Publica. 2005;18(6):381–7.

Content Last Modified: 10/31/2011 12:26:00 PM
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