- statistically accurate and used for statistical descriptions OR
- legal requirements call for use of the terms.
- 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:
- OMB’s official SPD 15 revision information site.
- White House Blog from Dr. Karen Orvis, Chief Statistician of the United States. English | Spanish | Arabic
2024 Race and Ethnicity Question Formats
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.
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:
- 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.
- 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.
- June 11, 2024, Race, Ethnicity, & SOGI Data Standards Presentation to PRA Bi-Monthly Meeting
- Resources for Improving Demographic Data Quality this HHS website provides a range of resources to support the collection and use of demographic and other sensitive information.
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
- Sexual Orientation, Gender Identity, and Sex Characteristics Subcommittee of the Federal Committee on Statistical Methodology website contains links to research and recommendations for the collection of SOGI data.
- SOGI Data Checklist for HHS Operating and Staff Divisions is a tool for HHS Operating and Staff Divisions to determine if their data collections utilize best practices to meet the needs of LGBTQI+ individuals and their families.
- Sexual Orientation and Gender Identity (SOGI) Data Action Plan details HHS’ plans to use SOGI data to advance equity for LGBTQI+ individuals and how the agency will implement recommendations from the Federal Evidence Agenda on LGBTQI+ Equity.
- Resources for Improving Demographic Data Quality this HHS website provides a range of resources to support the collection and use of demographic and other sensitive information.
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)
- ____Very well
- ____Well
- ____Not well
- ____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.
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.
- Do you speak a language other than English at home? (5 years old or older)
- ____ Yes
- ____ No
For persons speaking a language other than English (answering yes to the question above):
- What is this language? (5 years old or older)
- ____Spanish
- ____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
- Are you deaf or do you have serious difficulty hearing?
- ____ Yes
- ____ No
- ____ Yes
- ____ No
- ____ Yes
- ____ No
- ____ Yes
- ____ No
- ____ Yes
- ____ No
- ____ Yes
- ____ No
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:
- 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.
- Otherwise, any race and ethnicity data collection must be updated as part of its regular extension or revision request.
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- Office of Management and Budget Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, issued March 28, 2024.
- HHS Inclusion Policy for Race and Ethnicity
i US 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
ii The 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
iii Controlling Paperwork Burdens on the Public. Code of Federal Regulations. 5 CFR Section 1320.
