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HHS Logo Eagle IconU.S. Department of Health and Human Services

HHS Implementation Guidance on Data Collection Standards for Race, Ethnicity, Sex, Primary Language, and Disability Status

Publication Date

Purpose

The purpose of this guidance is to promulgate a set of uniform data collection standards for inclusion in health care or public health program, activity, or surveys conducted or sponsored by the US Department of Health and Human Services (HHS) as required by Section 4302 of the Affordable Care Act (ACA). Additionally, this guidance discusses collecting sexual orientation and gender identity (SOGI) data to promote inclusive and responsible data practices as required by Executive Order 14075. This guidance may also be useful for other HHS data collections.

Overview of Section 4302 of the Affordable Care Act

Section 4302 (Understanding health disparities: data collection and analysis) of the ACA focuses on the standardization, collection, analysis, and reporting of health disparities data.

This section of the ACA requires the Secretary of HHS to establish data collection standards for race, ethnicity, sex, primary language, and disability status. The law requires that, once established, these data collection standards be used, to the extent practicable, in health care or public health program, activity or surveys conducted or sponsored by HHS.

Executive Order 14075 Advancing Equality for Lesbian, Gay, Bisexual, Transgender, Queer, and Intersex Individuals

Advancing equity and full inclusion for lesbian, gay, bisexual, transgender, queer, and intersex (LGBTQI+) individuals requires the Federal Government to develop evidence and use data to measure and address the disparities that LGBTQI+ individuals, families, and households face, while safeguarding privacy, security, and civil rights. Section 11 of Executive Order 14075 lays out several actions with an aim to promote inclusive and responsible Federal data collection practices around sexual orientation, gender identity, and sex characteristics data.

In response to the statutory requirements of the ACA this guidance outlines minimum data collection standards for race and ethnicity, sex, primary language, and disability status. This guidance also includes a resource for collecting, reporting, and safeguarding sexual orientation and gender identity data gathered through surveys, developed by the Office of Management and Budget (OMB) in response to Executive Order 14075.

While data collection alone will not reduce disparities, it can be foundational to our efforts to understand the root-causes, design and implement evidence-based responses and evaluate our progress.

Data Collection Standards

The following standards address the collection of data related to Race and Ethnicity; Sexual Orientation, Gender Identity & Sex Characteristics; Primary Language; and Disability Status.

Race and Ethnicity
Sexual Orientation, Gender Identity & Sex Characteristics
Primary Language
Disability Status

Race and Ethnicity

All HHS race and ethnicity data collections must conform to OMB’s government-wide standard, Statistical Policy Directive No. 15 (SPD 15): Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity. OMB released a revised SPD 15 on March 28, 2024, after an extensive review process including public engagement, research, and field testing. For more details on the review process please visit OMB’s official SPD 15 revision information site.

The 2024 revisions replace and supersede OMB's 1997 Revisions to the Standards for the Classification of Federal Data on Race and Ethnicity. The revisions are intended to improve the accuracy and usefulness of race and ethnicity data collected by the federal government.

Key Changes to SPD 15 in 2024

  1. One Question for Race and Ethnicity:

    2024 Standard1997 Standard
    A single question asking about race and ethnicity. Hispanic/Latino is listed co-equal to the other minimum categories. Individuals are encouraged to choose as many categories as describes their identity.Two separate questions. The first question asked about Hispanic/Latino ethnicity followed by a second question about race.

  2. Middle Eastern or North African Category (MENA):

    2024 Standard1997 Standard
    A new, distinct minimum category for Middle Eastern or North African (MENA).Individuals with origins in these regions were included in the White minimum category.

  3. Detailed Data Collection Required:

    2024 Standard1997 Standard
    Agencies are required to collect detailed race and ethnicity data beyond the minimum categories unless the data collection effort is granted an exception waiver by OMB.Collection of detailed race and ethnicity information was encouraged but not mandatory.
  4. Updates to Terms and Instructions:
    • Terminology used within minimum category names and definitions were updated to ensure all federal data collections use clear and up-to-date language.
    • Data collections must use “race and/or ethnicity” in question stems.
    • Agencies must discontinue the use of the terms “majority” and “minority” on data collection instruments and reports. Except when:
      • statistically accurate and used for statistical descriptions OR
      • legal requirements call for use of the terms.
  5. Use of Write-In Categories:
    • In detailed data collections, the “Another group” checkbox should be replaced with write-in fields that allow individuals to self-identify.

For a more in-depth look at these and other updates to SPD 15, see:

2024 Race and Ethnicity Question Formats

 Examples - Click image to viewNotes
Figure 1: Minimum categories with multiple detailed checkboxes and write-in response with example groups
Image of a form
SPD 15 envisions that whenever possible agencies will collect race and ethnicity data with a question format that includes the required minimum categories disaggregated by the required detailed categories as illustrated in Figure 1.
Figure 2: Minimum categories only with examples
Figure 2: Minimum categories only with examples
If an agency determines that the potential benefit of the detailed data would not justify the additional burden to the agency and the public or the additional risk to privacy or confidentiality, the agency may request an exemption from the Office of Information and Regulatory Affairs (OIRA) to collect the minimum categories only – Figure 2 and Figure 3.

The agency must justify this determination in the agency's Paperwork Reduction Act (PRA) information collection review package. In cases where the data collection is not subject to the PRA approval process, a direct request for a variance should be made to OMB through OIRA.

When using the minimum categories only, the quality of the data and consistency with other datasets may be improved by providing the respondent with examples as shown in Figure 2. Agencies should provide these examples when feasible over the example in Figure 3 without examples.
Figure 3: Minimum categories only
Figure 3: Minimum categories only

2024 Revision Implementation Next Steps

Planning
OMB requires each Federal Agency to submit an implementation action plan within 18-months. This plan must be made available to public by September 29, 2025.

At HHS, the Evaluation Officer within the Assistant Secretary for Planning and Evaluation (ASPE) will coordinate the development of a cross-HHS action-plan in partnership with HHS’ Statistical Official at the National Center for Health Statistics (NCHS).

ASPE will connect with stakeholders within HHS and the public through a variety of engagements. More information on engagement opportunities will be posted to this page.

Implementation
New collections submitted for Paperwork Reduction Act clearance as of March 28, 2024, are expected to follow the updated standards.

To bring existing agency information collections into compliance with the updated standards, agencies must pursue one of two options by or before March 28, 2029:

  1. If the only change to an existing collection is to update the race and ethnicity question, agencies can submit a non-substantive change request modifying the collection.
  2. Otherwise, any race and ethnicity data collection must be updated as part of its regular extension or revision request.

If data owners have concerns regarding the PRA process, they should contact their Division’s PRA liaison or the HHS PRA liaison at HHS_PRA@HHS.Gov. OMB’s deadline for full compliance with the updated SPD 15 is March 28, 2029.

Additional Resources

Contact the HHS SPD15 Revision Implementation Team

Email questions and requests for technical assistance to spd15@hhs.gov

Sexual Orientation, Gender Identity, and Sex Characteristics

The HHS Sexual Orientation and Gender Identity (SOGI) Data Action Plan tasks HHS Operating and Staff Divisions with reviewing their data collections for usages of binary gender and sex data in HHS developed or funded data instruments. Any current usage of binary gender and sex data in HHS developed or funded data instruments and should be replaced with tested and inclusive gender identity (which may include sex assigned at birth) data measures.

There are no agreed upon standards for federal SOGI data collections. Per recommendations released by OMB in 2023, “There is no single, best practice set of questions for soliciting information about a person’s sexual orientation or gender identity. The context of the data collection, including planned uses for the data, alignment with other surveys or datasets, sample size, ability to code write-in responses, and ability to protect confidentiality should guide decisions about when and how to ask for this information.”

For considerations related to the collection of sexual orientation, gender identity, and sex characteristics (SOGI) data and sample questions for surveys, see - “How to Ask About Sexual Orientation and Gender Identity Section” (page 4-6) of Recommendations on the Best Practices for The Collection of Sexual Orientation and Gender Identity Data on Federal Statistical Surveys. Additional best practices for data reporting and safeguarding data are also included in this resource. Please note, the recommendations do not address the collection of SOGI data as part of administrative transactions (e.g., forms required to apply for a job, benefits, or services). Administrative data collections have different quality, privacy, legal, and ethical concerns that are beyond the scope of the report.

Additional Resources

Primary Language

The standard for primary language is a measure of English proficiency. The recommended question is based on that used on the American Community Survey (ACS). The question applies to respondents aged five years and above. For additional information including the rationale used to develop this standard see U.S. Department of Health and Human Services Implementation Guidance on Data Collection Standards (2011).

Data Standard for Primary Language

How well do you speak English? (5 years old or older)

  1. ____Very well
  2. ____Well
  3. ____Not well
  4. ____Not at all

The primary language data standard represents a minimum standard and the question-and-answer categories cannot be changed. Additional questions on language may be added to any data collection as long as the minimum standard is included.

Optional Granularity

For agencies that wish to collect data on the specific language spoken, the Data Council recommends collecting data on language spoken at home. The recommended data collection items are used in the ACS (see below). Collecting this additional information would be optional and at the discretion of the agency if information on specific language was desired.

  1. Do you speak a language other than English at home? (5 years old or older)
    1. ____ Yes
    2. ____ No

For persons speaking a language other than English (answering yes to the question above):

  1. What is this language? (5 years old or older)
    1. ____Spanish
    2. ____Other Language (Identify)

Disability Status

The six-item set of questions used on American Community Survey (ACS) and other major data collections is the data standard for questions on disability. Note the age thresholds for respondents for the different disability questions. For additional information including the rationale used to develop this standard see U.S. Department of Health and Human Services Implementation Guidance on Data Collection Standards (2011).

Data Standard for Disability Status

  1. Are you deaf or do you have serious difficulty hearing?
    1. ____ Yes
    2. ____ No
  2. Are you blind or do you have serious difficulty seeing, even when wearing glasses?
    1. ____ Yes
    2. ____ 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)
    1. ____ Yes
    2. ____ No
  4. Do you have serious difficulty walking or climbing stairs? (5 years old or older)
    1. ____ Yes
    2. ____ No
  5. Do you have difficulty dressing or bathing? (5 years old or older)
    1. ____ Yes
    2. ____ 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)
    1. ____ Yes
    2. ____ No

Implementation Guidance

Inclusion of Data on Race and Ethnicity, Sexual Orientation and Gender Identity, Primary Language, and Disability Status

The minimum data standards described herein on race and ethnicity, sexual orientation and gender identity, primary language, and disability status must be included in health care or public health program, activity or surveys conducted or sponsored by HHS.

Collecting and Reporting Data on Race and Ethnicity, Sexual Orientation and Gender Identity, Primary Language, and Disability Status

Data on race and ethnicity, sexual orientation and gender identity, primary language, and disability status must be collected, analyzed, and reported in an objective, accurate, and useful manner. Both the collection and reporting of the data must be sensitive to constituent concerns about potential misuse or abuse. Only those demographic categories for race and ethnicity, sexual orientation and gender identity, primary language, and disability status, with adequate sample sizes to provide statistically reliable data, should be reported. Information on the validity and reliability of the data should be included, whenever possible, to enable the readers to judge the credibility of the findings.

Data Collection and Reporting Activities Covered by Data Collection Standards

These data collection standards apply to health care or public health program, activity or surveys conducted or sponsored by HHS in which respondents either self-report information or a knowledgeable proxy provides information about the person or responds for all persons in a household. For purposes of this guidance, the terms "agency conducted or sponsored" are defined as in the Paperwork Reduction Act (PRA) implementing regulations (5 C.F.R. §1320.3(d)) and would generally include any data collection that would require OMB PRA approval. A federal agency is considered to "conduct or sponsor" a collection of information if the agency collects the information, causes another agency to collect the information, contracts or enters into a cooperative agreement with a person to collect the information, or requires a person to provide information to another person, or in similar ways causes another agency, contractor, partner in a cooperative agreement, or person to obtain, solicit, or require the disclosure to third parties or the public of information by or for an agency.

Collection of information through investigator-initiated grants are generally not subject to OMB review or to this policy, except if 1) the grant recipient is conducting the data collection at the specific request of the agency or 2) the terms and conditions of the grant require specific approval by the agency of the data collection procedures (5 C.F.R. §1320.3(d)).

Data Standards Represent a Minimum not Maximum

The data standards described here represent the minimum standard and are not intended to limit the collection of needed data. Agencies desiring more granularity or additional data are permitted and encouraged to collect additional data as needed as long as: the minimum standard is included.

In the case of race and ethnicity, OMB requires detailed disaggregated data as the default mode of data collection. If an agency determines that the potential benefit of the detailed data would not justify the additional burden to the agency and the public or the additional risk to privacy or confidentiality, the agency may request an exemption from the Office of Information and Regulatory Affairs (OIRA) to collect the minimum categories only. The agency must justify this determination in the agency's Paperwork Reduction Act (PRA) information collection review package. In cases where the data collection is not subject to the PRA approval process, a direct request for a variance should be made to OMB through OIRA.

For the disability data the standard questions and answer categories cannot be changed. However, surveys and administrative data collections my include additional disability questions as appropriate for the target population and any program requirements.

Implementation Schedule

HHS agencies are required to include the data collection standards in health care or public health program, activity, or surveys conducted or sponsored by HHS where subjects either self-report information or a knowledgeable proxy provides information about the subject or responds for all persons in a household.

In the case of race and ethnicity, new collections submitted as of March 28, 2024, for OMB review under the PRA are expected to follow the updated standards. To bring existing agency information collections into compliance with the updated standards, agencies must pursue one of two options by or before March 28, 2029:

  1. If the only change to an existing collection is to update the race and ethnicity question, agencies can submit a non-substantive change request modifying the collection.
  2. Otherwise, any race and ethnicity data collection must be updated as part of its regular extension or revision request.

Exemptions

Exemptions HHS’ inclusion policy for data on race, ethnicity, sexual orientation and gender identity, primary language, and disability status for HHS sponsored data collection activities are as follows:

When a data collection activity of an HHS Operating or Staff Division, component, or HHS-funded program is directed to one or a limited number of categories of a specific demographic variable (e.g., women), only that specific demographic variable may be eligible for exclusion, but other standards would still be required.

When consultation with the Agency statistician determines that the data on categories for any demographic group (race and ethnicity, sexual orientation and gender identity, primary language, or disability status) are considered statistically unreliable, then such demographic groups should not be reported separately unless accompanied by the appropriate caveats.

Special exemptions may be granted on a case-by-case basis by the HHS Secretary or a designee.

Related Policies

iUS Department of Health and Human Services. (2023). Sexual Orientation and Gender Identity (SOGI) Data Action Plan. https://www.hhs.gov/sites/default/files/hhs-sogi-data-action-plan.pdf

iiThe White House (2023). Recommendations on Best Practices for SOGI Data Collection in Federal Statistical Surveys. https://www.whitehouse.gov/wp-content/uploads/2023/01/SOGI-Best-Practices.pdf

iiiControlling Paperwork Burdens on the Public. Code of Federal Regulations. 5 CFR Section 1320.

Files
U.S. Department of Health and Human Services Implementation Guidance on Data Collection Standards (pdf, 346 KB)
Topics
Data & Information Infrastructure
Populations
Racial & Ethnic Groups | People with Disabilities