Health Law Daily Wrap Up, HEALTH CARE REFORM—OTHER AGENCY DOCUMENTS: HHS implements guidance on data collection standards for race, ethnicity, sex, language, disability, (Aug 15, 2024)

By Susan L. Smith, JD, MA

As required by §4302 of the Affordable Care Act, HHS has promulgated a set of uniform collection standards for race, sex, primary language, and disability status required to be included in surveys conducted by HHS to improve efforts to identify and t ...

By Susan L. Smith, JD, MA

HHS has issued implementation guidance to outline the new minimum data collection standards for race, ethnicity, sex, primary language, and disability status for execution in HHS, including a description of the data standards development process, the rationale for each standard, and instructions for their implementation. Section 4032 of the Affordable Care Act (ACA) requires the HHS Secretary to establish data collection standards for race, ethnicity, sex, primary language, and disability status and requires, once established, that these data collection standards be used in all national population surveys to the extent possible. The §4032 requirement focuses on the standardization, collection, analysis, and reporting of health disparities data (ASPE Document, Aug. 13, 2024).

Development of data standards. The Section 4023 Standards Workgroup is a special workgroup within the HHS Data Council led the task. The following criteria were used as a guide to develop the standards.

Data standards would be evidence-based and demonstrated to have worked well in practice for national survey data collection.
Data standards would be framed as minimum data standards, with agencies permitted to include as many additional questions on these topics as desired as long as the minimum standard is included. Agencies would also be permitted to include additional response categories for data standards with as much additional detail and granularity as desired, provided that the additional detail could be aggregated back to the minimum standard and the sample design and sample size support estimates at that level of granularity.
The data standards would comply with at a minimum, any standards already mandated by OMB.
Data standards are for person-level data collected in population-based health surveys, where subjects either self-report information or a knowledgeable proxy provides information about the subject or responds for all persons in a household.

Data collection standards. For race and ethnicity, the implementation guidance refers to the Office of Management and Budget (OMB) revised Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity released on March 28, 2024.

For sexual orientation, gender identity, and sex characteristics, HHS referred to the development of a Sexual Orientation and Gender Identity (SOGI) Data Action Plan to promote inclusive and responsible data collection practices around sexual orientation, gender identity, and sex characteristic data pursuant to Executive Order 14075. There are no agreed upon standards for federal SOGI data collection.

The standard for primary language is a measure of English proficiency. The recommended question is based on the American Community Reports (ASC), which assesses both English proficiency and language spoken other than English. It applies to participants aged five years and above. The minimum standard question asks the individual how well he or she speaks English, including very well, well, not well, and not at all. Additional questions can be asked as long as the minimum standard is included. Collecting additional information regarding the specific language spoken at home is optional.

The data standard for survey questions related to disability status is based on ACS and other major surveys. The six questions, which can only be answered yes or no, cover deafness, blindness, mental health, walking and climbing, and dressing and bathing, and a question asking whether a physical, mental, or emotional condition impairs the ability to do errands alone. This is a minimum standard and the question-and-answer categories cannot be changed. Additional questions on disability may be added to the survey.

Implementation. The implantation guidance states the following requirements:

The minimum data standards described on race ethnicity, sex, primary language, and disability must be included in all population health surveys conducted or sponsored by HHS.
Data on race, ethnicity, sex, primary language, and disability status must be collected, analyzed, and reported in an objective, accurate and useful manner. The collection and reporting of the data must be sensitive to constituent concerns about potential misuse or abuse. Only those demographic categories for race, ethnicity, sex, 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.
This policy applies to population-based health 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.
The data standards described represent minimum standards and are not intended to limit the collection of needed data. For the disability data standard, although survey questions and answer categories included in the standard cannot be changed, additional disability questions may be included.
HHS agencies are required to include the data collection standards in all HHS conducted or sponsored person level data collected in population-based health surveys, where subjects either self-report information or a knowledgeable proxy provides information about the subject or responds for all persons in a household. Any new survey must include the standards, and current surveys must incorporate the data standards no later than the time of the next major revision.

Exemptions. Exemptions to this inclusion policy apply:

When a data collection activity of an HHS Agency, component, or HHS-funded program is directed to one or a limited number of categories of a specific demographic variable, only that specific demographic variable would be excluded, but other standards would still be required.
When consultation with the Agency statistician determines that the data on categories for any particular demographic group- race, ethnicity, sex, primary language, or disability status- are considered statistically unreliable, 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.

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Health Law Daily Wrap Up, HEALTH CARE REFORM—OTHER AGENCY DOCUMENTS: HHS implements guidance on data collection standards for race, ethnicity, sex, language, disability, (Aug 15, 2024)

By Susan L. Smith, JD, MA

Data standards would be evidence-based and demonstrated to have worked well in practice for national survey data collection.
Data standards would be framed as minimum data standards, with agencies permitted to include as many additional questions on these topics as desired as long as the minimum standard is included. Agencies would also be permitted to include additional response categories for data standards with as much additional detail and granularity as desired, provided that the additional detail could be aggregated back to the minimum standard and the sample design and sample size support estimates at that level of granularity.
The data standards would comply with at a minimum, any standards already mandated by OMB.
Data standards are for person-level data collected in population-based health surveys, where subjects either self-report information or a knowledgeable proxy provides information about the subject or responds for all persons in a household.

Implementation. The implantation guidance states the following requirements:

The minimum data standards described on race ethnicity, sex, primary language, and disability must be included in all population health surveys conducted or sponsored by HHS.
Data on race, ethnicity, sex, primary language, and disability status must be collected, analyzed, and reported in an objective, accurate and useful manner. The collection and reporting of the data must be sensitive to constituent concerns about potential misuse or abuse. Only those demographic categories for race, ethnicity, sex, 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.
This policy applies to population-based health 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.
The data standards described represent minimum standards and are not intended to limit the collection of needed data. For the disability data standard, although survey questions and answer categories included in the standard cannot be changed, additional disability questions may be included.
HHS agencies are required to include the data collection standards in all HHS conducted or sponsored person level data collected in population-based health surveys, where subjects either self-report information or a knowledgeable proxy provides information about the subject or responds for all persons in a household. Any new survey must include the standards, and current surveys must incorporate the data standards no later than the time of the next major revision.

Exemptions. Exemptions to this inclusion policy apply:

When a data collection activity of an HHS Agency, component, or HHS-funded program is directed to one or a limited number of categories of a specific demographic variable, only that specific demographic variable would be excluded, but other standards would still be required.
When consultation with the Agency statistician determines that the data on categories for any particular demographic group- race, ethnicity, sex, primary language, or disability status- are considered statistically unreliable, 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.

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