Health Equity and Accountability Act of 2026

This Act may be cited as the “Health Equity and Accountability Act of 2026”.

The table of contents for this Act is as follows:

(a) Amendments to the Public Health Service Act.—

(1) Purposes.— The purposes of the amendments made by this subsection are to—

(A) promote culturally and linguistically appropriate data collection, analysis, and reporting by race, ethnicity, sex, primary language, sexual orientation, disability status, gender identity, age, and socioeconomic status in federally supported health programs; and

(B) ensure that data with respect to race and ethnicity is collected in accordance with the Revisions to OMB’s Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (89 Fed. Reg. 22182; March 29, 2024).

(2) AHRQ general authorities.— Section 902(a) of the Public Health Service Act (42 U.S.C. 299a(a)) is amended—

(A) in paragraph (8), by striking “and” at the end;

(B) in paragraph (9), by striking the period at the end and inserting “; and”; and

(C) by adding at the end the following:

“(10) cultural and linguistic competence of health care services and of data collection activities described under section 3101.”.

(3) Definition of racial and ethnic minority group.—

(A) In general.— Section 1707(g)(1) of the Public Health Service Act (42 U.S.C. 300u–6(g)(1)) is amended to read as follows:

“(1)

(A) The term racial and ethnic minority group means a group of individuals who are any of the following:

(i) American Indian or Alaska Native.

(ii) Asian.

(iii) Black or African American, including individuals of African ancestry.

(iv) Hispanic or Latino.

(v) Middle Eastern or North African.

(vi) Native Hawaiian or Pacific Islander.

(B) The terms listed in clauses (i) through (vi) of subparagraph (A) shall have the meanings given such terms for purposes of the Revisions to OMB's Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (89 Fed. Reg. 22182; March 29, 2024).”.

(B) References.— Except as otherwise specified, any reference to the term racial and ethnic minority group in any Federal regulation, guidance, order, or document for establishment or implementation of any federally conducted or supported health care or public health program, activity, or survey shall be treated as having the definition given to such term in section 1707(g) of the Public Health Service Act (42 U.S.C. 300u–6(g)).

(C) Similar terminology.— Not later than 2 years after the date of enactment of this Act, the Secretary of Health and Human Services shall—

(i) identify all regulations, guidance, orders, and documents of the Department of Health and Human Services for establishment or implementation of a health care or public health program, activity, or survey that use, without a definition, terminology that is similar to the term racial and ethnic minority group; and

(ii) take such actions as may be necessary to clarify whether the definition of the term racial and ethnic minority group in section 1707(g)(1) of the Public Health Service Act (42 U.S.C. 300u–6(g)(1)), as amended by subparagraph (A), applies to such terminology.

(4) Office of Minority Health duties.— Section 1707(b)(6) of the Public Health Service Act (42 U.S.C. 300u–6(b)(6)) is amended by inserting “, and subgroups of racial and ethnic minority groups, and collects and reports such data consistent with the Revisions to OMB's Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (89 Fed. Reg. 22182; March 29, 2024) and the standards developed under section 3101(a)(2)(B)” after “the health status of each minority group”.

(5) Office of the National Coordinator for Health Information Technology.— Section 3001 of the Public Health Service Act (42 U.S.C. 300jj–11) is amended—

(A) in subsection (b)—

(i) in paragraph (10), by striking “and” at the end;

(ii) in paragraph (11), by striking the period at the end and inserting “; and”; and

(iii) by adding at the end the following:

“(12) ensures the interoperability of health information systems among federally conducted or supported health care or public health programs, State health agencies, and social service agencies.”; and

(B) by amending clause (vii) in subsection (c)(3)(A) to read as follows:

“(vii) Strategies to enhance the use of health information technology in improving the quality of health care; reducing medical errors; reducing health disparities and ensuring the provision of equitable health services; improving public health; increasing prevention and coordination with community resources; ensuring interoperability among federally conducted or supported health care or public health programs, State health agencies, and social service agencies; and improving the continuity of care among health care settings.”.

(6) Data collection, analysis, and quality.— Section 3101(a) of the Public Health Service Act (42 U.S.C. 300kk(a)) is amended—

(A) in paragraphs (1)(A), (1)(C), (2)(B) and (2)(E), by striking “and disability status” and inserting “sexual orientation, gender identity, age, disability status, and socioeconomic status”;

(B) in paragraph (1)—

(i) in subparagraph (C), by striking “; and” and inserting a semicolon; and

(ii) by striking subparagraph (D) and inserting the following:

“(D) data for additional population groups if such groups can be aggregated into the data collection standards described under paragraph (2); and

(E) data that is disaggregated by population groups, except in cases in which such disaggregation is statistically unreliable and the head of the program, activity, or survey documents such unreliability;”;

(C) in paragraph (2)—

(i) by amending subparagraph (A) to read as follows:

“(A) with respect to data on race and ethnicity, use the standards provided in the Revisions to OMB's Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (89 Fed. Reg. 22182; March 29, 2024);”;

(ii) in subparagraph (B), as amended by subparagraph (A), by adding before the semicolon “that are equivalent, as practicable, to the standards described in subparagraph (A)”; and

(iii) in subparagraph (C)—

(I) in clause (i), by striking “and” at the end;

(II) in clause (ii), striking “is a minor or legally incapacitated” and inserting “is a minor, requires assistance with communication in speech or writing, or is legally incapacitated”; and

(III) by adding at the end the following:

“(iii) collects data in a manner that is culturally and linguistically appropriate and does not include questions unrelated to, or that could potentially deter, care, such as questions related to immigration status; and

(iv) prohibits assignment of an individual to a population group by a provider or institution;”;

(D) in paragraph (3), by amending subparagraph (B) to read as follows:

“(B) develop interoperability and security systems for data management among federally conducted or supported health care or public health programs, State health agencies, and social service agencies.”; and

(E) by adding at the end the following:

“(4) Responses.— In collecting data under this subsection, the Secretary shall—

(A) allow respondents to select multiple race or ethnicities and provide detailed write-in responses, consistent with the Revisions to OMB's Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (89 Fed. Reg. 22182; March 29, 2024); and

(B) ensure that any responses selecting multiple race or ethnicities, and write-in responses described in subparagraph (A), are retained by the Secretary and coded for analysis.”.

(b) Corollary provisions.—

(1) Recommendations by the Data Council.— The Data Council of the Department of Health and Human Services, in consultation with the Director of the National Center for Health Statistics, the Deputy Assistant Secretary for Minority Health, the Deputy Assistant Secretary for Women’s Health, the Administrator of the Centers for Medicare & Medicaid Services, the National Coordinator for Health Information Technology, and other appropriate public and private entities and officials, shall make recommendations to the Secretary of Health and Human Services concerning how to—

(A) implement the amendments made by this section, while minimizing the cost and administrative burdens of data collection and reporting on all parties, including patients and providers, without reducing data granularity or deviating from the standards provided in the Revisions to OMB's Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (89 Fed. Reg. 22182; March 29, 2024);

(B) require Federal agencies administering programs, activities, or surveys described in section 3101(a) of the Public Health Service Act (42 U.S.C. 300kk(a)) to monitor and report rates of missing or incomplete data required under such section and improve the completeness of such data;

(C) expand awareness among Federal agencies, States, territories, Indian Tribes, counties, municipalities, health providers, health plans, and the general public that data collection, analysis, and reporting by race, ethnicity, sex, primary language, sexual orientation, gender identity, age, socioeconomic status, and disability status is legal and necessary to ensure equity and nondiscrimination in the quality of health care services;

(D) ensure that future patient record systems—

(i) follow Federal standards promulgated under the HITECH Act (42 U.S.C. 201 note) for the collection and meaningful use of electronic health data on race, ethnicity, sex, primary language, sexual orientation, gender identity, age, socioeconomic status, and disability status; and

(ii) are consistent with the United States Core Data for Interoperability data classes and use of structured, coded data elements and standardized value sets for race, ethnicity, sex, primary language, sexual orientation, gender identity, age, socioeconomic status, and disability status that support interoperability;

(E) improve health and health care data collection and analysis for more population groups if such groups can be aggregated into minimum race and ethnicity categories, including exploring the feasibility of enhancing collection efforts in States, counties, and municipalities for racial and ethnic groups that comprise a significant proportion of the population of the State, county, or municipality;

(F) subject to all applicable privacy and confidentiality requirements, including HIPAA privacy and security law as defined in section 3009(a) of the Public Health Service Act (42 U.S.C. 300jj–19(a)), provide researchers with greater access to racial, ethnic, primary language, sex, sexual orientation, gender identity, age, socioeconomic status, and disability status data, including de-identified, disaggregated datasets for research and public reporting, including for analysis of intersectional disparities across demographics;

(G) ensure the cultural and linguistic competence of entities that receive Federal support to collect and report data pursuant to the amendments made by subsection (a); and

(H) safeguard and prevent the misuse of data collected under section 3101 of the Public Health Service Act (42 U.S.C. 300kk), as amended by subsection (a)(6), without limiting the lawful collection, reporting, and use of disaggregated demographic data.

(2) Rules of construction.— Nothing in this section shall be construed to—

(A) permit the use of information collected under this section or any provision amended by this section in a manner that would adversely affect any individual providing any such information, including adverse effects to the relatives of the individual and to the community or communities of the individual; or

(B) diminish any requirements on health care providers to collect data, including such requirements in effect on or after the date of enactment of this Act.

(3) Technical assistance for the analysis of health disparity data.— The Secretary of Health and Human Services, acting through the Director of the Agency for Healthcare Research and Quality, and in coordination with the Assistant Secretary for Planning and Evaluation, the Administrator of the Centers for Medicare & Medicaid Services, the Director of the National Center for Health Statistics, the Director of the National Institutes of Health, and the National Coordinator for Health Information Technology, shall provide technical assistance to agencies of the Department of Health and Human Services in meeting Federal standards for health disparity data collection and for analysis of racial, ethnic, nationality, sex, gender, sexual orientation, gender identity, geographical, age, primary language, disability status, socioeconomic, and other disparities in health and health care in programs conducted or supported by such agencies by—

(A) identifying appropriate quality assurance mechanisms to monitor for health disparities;

(B) specifying the clinical, diagnostic, or therapeutic measures which should be monitored;

(C) developing new quality measures relating to racial and ethnic disparities and their overlap with other disparity factors in health and health care;

(D) identifying the level at which data analysis should be conducted;

(E) sharing data with external organizations for research and quality improvement purposes; and

(F) identifying and addressing issues relating to the interoperability of Federal- and State-level health information systems which undermine the ability of health-related programs collecting data under this section to achieve the purposes described in subsection (a)(1).

(4) Authorization of appropriations.— To carry out this subsection, subsection (a), and the amendments made by subsection (a), there are authorized to be appropriated such sums as may be necessary for each of fiscal years 2027 through 2031.

(c) Additional amendments to the Public Health Service Act.— Title XXXIV of the Public Health Service Act, as added by titles II and III of this Act, is further amended by inserting after subtitle B the following:

“(a) In general.— The Secretary, acting through the Director of the Agency for Healthcare Research and Quality and in consultation with the Deputy Assistant Secretary for Minority Health, the Director of the National Institutes of Health, the Assistant Secretary for Planning and Evaluation, the National Coordinator for Health Information Technology, and the Director of the National Center for Health Statistics, shall establish a technical assistance program under which the Secretary provides grants to eligible entities to assist such entities in complying with section 3101.

(b) Types of assistance.— A grant provided under this section may be used to—

(1) enhance or upgrade computer technology that will facilitate collection, analysis, and reporting of racial, ethnic, primary language, sexual orientation, sex, gender identity, age, socioeconomic status, and disability status data;

(2) improve methods for health data collection and analysis, including additional population groups if such groups can be aggregated into the race and ethnicity categories outlined by standards developed under section 3101;

(3) develop mechanisms for submitting collected data subject to any applicable privacy and confidentiality regulations;

(4) develop educational programs to inform health plans, health providers, health-related agencies, and the general public that data collection and reporting by race, ethnicity, primary language, sexual orientation, sex, gender identity, age, disability status, and socioeconomic status are legal and essential for eliminating health and health care disparities; and

(5) develop educational programs to train health providers, health care organizations, health plans, health-related agencies, and frontline health care workers on how to collect and report disaggregated data in a culturally and linguistically appropriate manner, including the privacy and confidentiality interests of individuals from whom the data is collected.

(c) Eligible entity.— To be eligible for grants under this section, an entity shall—

(1) be a State, territory, Indian Tribe, municipality, county, health provider, health care organization, or health plan making a demonstrated effort to bring data collections into compliance with section 3101;

(2) be in compliance with the standards provided in the Revisions to OMB's Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity (89 Fed. Reg. 22182; March 29, 2024); and

(3) agree to require training for personnel implementing the requirements of section 3101 on culturally appropriate, standardized data collection.

(d) Authorization of appropriations.— There are authorized to be appropriated to carry out this section such sums as may be necessary for each of fiscal years 2027 through 2031.

(a) National requirement.—

(1) In general.— The Secretary, acting through the Director of the National Center for Health Statistics, and other officials within the Department of Health and Human Services as the Secretary determines appropriate, shall develop and implement a sustainable national requirement applicable to all Federal health surveys and program data collections for the oversampling of underrepresented populations within the categories of race, ethnicity, sex, primary language, sexual orientation, disability status, gender identity, age, and socioeconomic status as determined appropriate by the Secretary. Such national requirement shall include—

(A) minimum sample thresholds for the oversampling of underrepresented populations; and

(B) a requirement for oversampling of Middle Easterners and North Africans, Asian Americans, American Indians, Alaska Natives, Native Hawaiians, and Pacific Islanders.

(2) Consultation.— In developing and implementing a national requirement, as described in paragraph (1), not later than 180 days after the date of the enactment of this section, the Secretary shall—

(A) consult with representatives of community groups, nonprofit organizations, nongovernmental organizations, and government agencies working with underrepresented populations;

(B) solicit the participation of representatives from other Federal departments and agencies, including subagencies of the Department of Health and Human Services; and

(C) consult on, and use as models, the 2014 National Health Interview Survey oversample of Native Hawaiian and Pacific Islander populations, the 2016 Behavioral Risk Factor Survey of Health Risk Behaviors Among Arab Adults Within the State of Michigan, and the 2017 Behavioral Risk Factor Surveillance System oversample of American Indian and Alaska Native communities.

(b) Progress report.— Not later than 2 years after the date of enactment of this section, the Secretary shall submit to the Congress a progress report, which shall include the national requirement under subsection (a)(1).

(c) Authorization of appropriations.— To carry out this section, there are authorized to be appropriated such sums as may be necessary for each of fiscal years 2027 through 2031.”.

(d) Report to Congress.— Not later than 2 years after the date of enactment of this Act, the Secretary of Health and Human Services shall submit a report to Congress on the implementation of this section, including the amendments made by this section.

Section 3101 of the Public Health Service Act (42 U.S.C. 300kk), as amended by section 1001(a), is further amended—

(1) by striking subsection (h); and

(2) by redesignating subsection (i) as subsection (h).

Part A of title XI of the Social Security Act (42 U.S.C. 1301 et seq.) is amended by adding at the end the following:

“1150D. Collection of data for the Medicare program.—

(a) Requirement.—

(1) In general.— The Commissioner of Social Security (in this section referred to as the Commissioner), in consultation with the Administrator of the Centers for Medicare & Medicaid Services (in this section referred to as the Administrator), shall collect data on the race, ethnicity, sex, primary language, sexual orientation, gender identity, socioeconomic status, age, and disability status of all applicants for social security benefits under title II or Medicare benefits under title XVIII.

(2) Data collection standards.—

(A) In general.— In collecting data under paragraph (1), the Commissioner shall at least use the standards for data collection developed under section 3101 of the Public Health Service Act (42 U.S.C. 300kk) or the standards developed by the Office of Management and Budget, as the baseline standard, consistent with the Office of Management and Budget Statistical Policy Directive No. 15: Standards for Maintaining, Collecting, and Presenting Federal Data on Race and Ethnicity, or any successor Office of Management and Budget directive.

(B) No standards available.— In the event there are no standards for the demographic groups listed under paragraph (1), the Commissioner shall consult with stakeholder groups representing the various identities as well as with the Office of Minority Health within the Centers for Medicare & Medicaid Services to develop appropriate standards.

(3) Data for additional population groups.— Where practicable, the data collected by the Commissioner under paragraph (1) shall include data for additional population groups if such groups can be aggregated into the race and ethnicity categories outlined by the data collection standards described in paragraph (2)(A).

(4) Collection of data for minors and legally incapacitated individuals.— With respect to the collection of the data described in paragraph (1) of applicants who are under 18 years of age or otherwise legally incapacitated, the Commissioner shall require that—

(A) such data be collected from the parent or legal guardian of such an applicant; and

(B) the primary language of the parent or legal guardian of such an applicant or recipient be used in collecting the data.

(5) Quality of data.— The Commissioner shall periodically review the quality and completeness of the data collected under paragraph (1) and make adjustments as necessary to improve both.

(6) Transmission of data.— Upon enrollment for Medicare benefits under title XVIII, the Commissioner shall transmit the demographic data of an individual as collected under paragraph (1) to the Centers for Medicare & Medicaid Services.

(7) Analysis and reporting of data.— With respect to the data transmitted under paragraph (6), the Administrator, in consultation with the Commissioner, shall—

(A) require that such data be uniformly analyzed and that such analysis be reported at least annually to Congress;

(B) incorporate such data in other analysis and reporting on health disparities and the provision of inequitable health care services by a health care provider, as appropriate;

(C) make such data available to researchers, under the protections outlined in paragraph (8);

(D) provide opportunities to individuals enrolled for Medicare benefits under title XVIII to submit updated data;

(E) ensure that the provision of assistance or benefits to an applicant, or their relatives, is not denied or otherwise adversely affected because of the failure of the applicant to provide any of the data collected under paragraph (1); and

(F) ensure that the provision of assistance or benefit to an applicant or their relatives is not denied or otherwise adversely affected because of the content of the data provided by the applicant, except where it is required by law.

(8) Protection of data.— The Commissioner shall ensure (through the promulgation of regulations or otherwise) that all data collected pursuant to paragraph (1) is protected—

(A) under the same privacy protections as the Secretary applies to health data under the regulations promulgated under section 264(c) of the Health Insurance Portability and Accountability Act of 1996 (relating to the privacy of individually identifiable health information and other protections); and

(B) from all inappropriate internal use by any entity that collects, stores, or receives the data, including use of such data in determinations of eligibility (or continued eligibility) in health plans, and from other inappropriate uses, as defined by the Secretary.

(b) Rule of construction.— Nothing in this section shall be construed to permit the use of information collected under this section in a manner that would adversely affect any individual providing any such information.

(c) Technical assistance.— The Secretary may, either directly or by grant or contract, provide technical assistance to enable any entity to comply with the requirements of this section or with regulations implementing this section.

(d) Authorization of appropriations.— There are authorized to be appropriated to carry out this section $500,000,000 for fiscal year 2027 and $100,000,000 for each fiscal year thereafter.”.

(a) In general.— Not later than 1 year after the date of enactment of this Act, the Secretary of Health and Human Services shall revise the regulations promulgated under part C of title XI of the Social Security Act (42 U.S.C. 1320d et seq.) (relating to the collection of data on demographics in a health-related transaction) to require—

(1) the use, at a minimum, of standards for data collection on race, ethnicity, sex, primary language, sexual orientation, gender identity, age, disability status, and socioeconomic status developed under section 3101 of the Public Health Service Act (42 U.S.C. 300kk), as amended by section 1001(a)(6); and

(2) in consultation with the Office of the National Coordinator for Health Information Technology, the designation of the appropriate racial, ethnic, primary language, disability, sex, and other code sets as required for claims and enrollment data.

(b) Dissemination.— The Secretary of Health and Human Services shall disseminate the new standards developed under subsection (a) to all entities that are subject to the regulations described in such subsection and provide technical assistance with respect to the collection of the data involved.

(c) Compliance.— The Secretary of Health and Human Services shall require that entities comply with the new standards developed under subsection (a) not later than 2 years after the final promulgation of such standards.

Section 306(n) of the Public Health Service Act (42 U.S.C. 242k(n)) is amended—

(1) in paragraph (1), by striking “2003” and inserting “2027”;

(2) in paragraph (2), in the first sentence, by striking “2003” and inserting “2027”; and

(3) in paragraph (3), by striking “2002” and inserting “2027”.

(a) Repository of Government data.— The Secretary of Health and Human Services, in coordination with the officials referenced in subsection (b), shall establish a centralized electronic repository of Federal Government data on factors related to the health and well-being of the population of the United States.

(b) Collection; submission.— Not later than 180 days after the date of enactment of this Act, and January 31 of each year thereafter, each department, agency, and office of the Federal Government that has collected data on race, ethnicity, sex, primary language, sexual orientation, gender identity, age, disability status, or socioeconomic status during the preceding calendar year shall submit such data to the repository of Federal Government data established under subsection (a).

(c) Analysis; public availability; reporting.— Not later than April 30, 2027, and April 30 of each year thereafter, the Secretary of Health and Human Services, acting through the Assistant Secretary for Planning and Evaluation, the Assistant Secretary for Health, the Director of the Agency for Healthcare Research and Quality, the Director of the National Center for Health Statistics, the Administrator of the Centers for Medicare & Medicaid Services, the Director of the National Institute on Minority Health and Health Disparities, and the Deputy Assistant Secretary for Minority Health, shall—

(1) prepare and make available datasets for public use that relate to disparities in health status, health care access, health care quality, health outcomes, public health, the provision of equitable health services, and other areas of health and well-being by factors that include race, ethnicity, sex, primary language, sexual orientation, gender identity, disability status, age, and socioeconomic status;

(2) ensure that these datasets are publicly identified on the repository established under subsection (a) as “disparities” data; and

(3) submit a report to the Congress on the availability and use of such data by public stakeholders.

(a) Authority.— The Secretary of Health and Human Services, acting through the Director of the National Institute on Minority Health and Health Disparities and the Deputy Assistant Secretary for Minority Health, shall award grants to eligible entities to access and analyze racial and ethnic data on disparities in health and health care, and where possible other data on disparities in health and health care, to monitor and report on progress to reduce and eliminate disparities in health and health care.

(b) Eligible entity.— In this section, the term eligible entity means an entity that has an accredited public health, health policy, or health services research program and is any of the following:

(1) A part B institution, as defined in section 322 of the Higher Education Act of 1965 (20 U.S.C. 1061).

(2) A Hispanic-serving institution, as defined in section 502 of such Act (20 U.S.C. 1101a).

(3) A Tribal College or University, as defined in section 316 of such Act (20 U.S.C. 1059c).

(4) An Asian American and Native American Pacific Islander-serving institution, as defined in section 371(c) of such Act (20 U.S.C. 1067q(c)).

(c) Authorization of appropriations.— To carry out this section, there are authorized to be appropriated such sums as may be necessary for each of fiscal years 2027 through 2031.

(a) In general.— Chapter V of the Federal Food, Drug, and Cosmetic Act (21 U.S.C. 351 et seq.) is amended by inserting after section 505G (21 U.S.C. 355h) the following:

“505H. Safety and effectiveness of drugs with respect to racial and ethnic background.—

(a) Preapproval studies.— If there is evidence of a racial or ethnic disparity in safety or effectiveness with respect to a drug or biological product, then—

(1)

(A) in the case of a drug, the investigations required under section 505(b)(1)(A) shall include adequate and well-controlled investigations of the disparity; or

(B) in the case of a biological product, the evidence required under section 351(a) of the Public Health Service Act for approval of a biologics license application for the biological product shall include adequate and well-controlled investigations of the disparity; and

(2) if the investigations described in subparagraph (A) or (B) of paragraph (1) confirm that there is such a disparity, the labeling of the drug or biological product shall include appropriate information about the disparity.

(b) Postmarket studies.—

(1) In general.— If there is evidence of a racial or ethnic disparity in safety or effectiveness with respect to a drug for which there is an approved application under section 505 of this Act or of a biological product for which there is an approved license under section 351 of the Public Health Service Act, the Secretary may by order require the holder of the approved application or license to conduct, by a date specified by the Secretary, postmarket studies to investigate the disparity.

(2) Labeling.— If the Secretary determines that the postmarket studies confirm that there is a disparity described in paragraph (1), the labeling of the drug or biological product shall include appropriate information about the disparity.

(3) Study design.— The Secretary may, in an order under paragraph (1), specify all aspects of the design of the postmarket studies required under such paragraph for a drug or biological product, including the number of studies and study participants, and the other demographic characteristics of the study participants.

(4) Modifications of study design.— The Secretary may, by order and as necessary, modify any aspect of the design of a postmarket study required in an order under paragraph (1) after issuing such order.

(5) Study results.— The results from a study required under paragraph (1) shall be submitted to the Secretary as a supplement to the drug application or biologics license application.

(c) Applications under section 505(j).—

(1) In general.— A drug for which an application has been submitted or approved under section 505(j) shall not be considered ineligible for approval under that section or misbranded under section 502 on the basis that the labeling of the drug omits information relating to a disparity on the basis of racial or ethnic background as to the safety or effectiveness of the drug, whether derived from investigations or studies required under this section or derived from other sources, when the omitted information is protected by patent or by exclusivity under section 505(j)(5)(F).

(2) Labeling.— Notwithstanding paragraph (1), the Secretary may require that the labeling of a drug approved under section 505(j) that omits information relating to a disparity on the basis of racial or ethnic background as to the safety or effectiveness of the drug include a statement of any appropriate contraindications, warnings, or precautions related to the disparity that the Secretary considers necessary.

(d) Definition.— In this section, the term evidence of a racial or ethnic disparity in safety or effectiveness, with respect to a drug or biological product, includes—

(1) evidence that there is a disparity on the basis of racial or ethnic background as to safety or effectiveness of a drug or biological product in the same chemical class as the drug or biological product;

(2) evidence that there is a disparity on the basis of racial or ethnic background in the way the drug or biological product is metabolized; and

(3) other evidence as the Secretary may determine appropriate.”.

(b) Enforcement.— Section 502 of the Federal Food, Drug, and Cosmetic Act (21 U.S.C. 352) is amended by adding at the end the following:

“(hh) If it is a drug and the holder of the approved application under section 505 or license under section 351 of the Public Health Service Act for the drug has failed to complete the investigations or studies required under section 505H, or comply with any other requirement of such section 505H.”.

(c) Drug fees.— Section 736(a)(1)(A)(ii) of the Federal Food, Drug, and Cosmetic Act (21 U.S.C. 379h(a)(1)(A)(ii)) is amended by inserting after “are not required” the following: “, including postmarket studies required under section 505H,”.

Part B of title III of the Public Health Service Act (42 U.S.C. 243 et seq.) is amended by inserting after section 317V (42 U.S.C. 247b–24) the following:

“317W. Native Hawaiian and Pacific Islander health data.—

(a) Definitions.— In this section:

(1) Insular area.— The term insular area means Guam, the Commonwealth of the Northern Mariana Islands, American Samoa, the United States Virgin Islands, the Federated States of Micronesia, the Republic of Palau, or the Republic of the Marshall Islands.

(2) Native Hawaiians and Pacific Islanders (NHPI).— The term Native Hawaiians and Pacific Islanders or NHPI means people having origins in any of the original peoples of American Samoa, the Commonwealth of the Northern Mariana Islands, the Federated States of Micronesia, Guam, Hawaii, the Republic of the Marshall Islands, the Republic of Palau, or any other Pacific Island.

(3) NHPI stakeholder groups.— The term NHPI stakeholder group includes each of the following:

(A) Community group.— A group of NHPI who are organized at the community level, and may include a church group, social service group, national advocacy organization, or cultural group.

(B) Nonprofit, nongovernmental organization.— A group of NHPI with a demonstrated history of addressing NHPI issues, including a NHPI coalition.

(C) Designated organization.— An entity established to represent NHPI populations and which has statutory responsibilities to provide, or has community support for providing, health care.

(D) Government representatives of NHPI populations.— Representatives from Hawaii, American Samoa, the Commonwealth of the Northern Mariana Islands, the Federated States of Micronesia, Guam, the Republic of Palau, and the Republic of the Marshall Islands.

(b) Preliminary health survey.—

(1) In general.— The Secretary, acting through the Director of the National Center for Health Statistics of the Centers for Disease Control and Prevention (referred to in this section as NCHS), shall conduct a preliminary health survey in order to identify the major areas and regions in the continental United States, Hawaii, American Samoa, the Commonwealth of the Northern Mariana Islands, the Federated States of Micronesia, Guam, the Republic of Palau, and the Republic of the Marshall Islands in which NHPI people reside.

(2) Contents.— The health survey described in paragraph (1) shall include health data and any other data the Secretary determines to be—

(A) useful in determining health status and health care needs of NHPI populations; or

(B) required for developing or implementing the national strategy under subsection (c).

(3) Methodology.— Methodology for the health survey described in paragraph (1), including plans for designing questions, implementation, sampling, and analysis, shall be developed in consultation with NHPI stakeholder groups.

(4) Timeframe.— The survey required under this subsection shall be completed not later than 18 months after the date of enactment of the Health Equity and Accountability Act of 2026.

(c) National strategy.—

(1) In general.— The Secretary, acting through the Director of the NCHS and other agencies within the Department of Health and Human Services as the Secretary determines appropriate, shall develop and implement a sustainable national strategy for identifying and evaluating the health status and health care needs of NHPI populations living in the continental United States, Hawaii, American Samoa, the Commonwealth of the Northern Mariana Islands, the Federated States of Micronesia, Guam, the Republic of Palau, and the Republic of the Marshall Islands.

(2) Consultation.— In developing and implementing a national strategy, as described in paragraph (1), not later than 180 days after the date of enactment of the Health Equity and Accountability Act of 2026, the Secretary—

(A) shall consult with representatives of NHPI stakeholder groups; and

(B) may solicit the participation of representatives from other Federal agencies.

(d) Progress report.— Not later than 2 years after the date of enactment of the Health Equity and Accountability Act of 2026, the Secretary shall submit to Congress a progress report, which shall include the national strategy described in subsection (c)(1).

(e) Study and report by the Health and Medicine Division.—

(1) In general.— The Secretary shall seek to enter into an agreement with the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine to conduct a study, with input from stakeholders in insular areas, on each of the following:

(A) The standards and definitions of health care applied to health care systems in insular areas and the appropriateness of such standards and definitions.

(B) The status and performance of health care systems in insular areas, evaluated based upon standards and definitions, as the Secretary determines appropriate.

(C) The effectiveness of donor aid in addressing health care needs and priorities in insular areas.

(D) The progress toward implementation of recommendations of the Committee on Health Care Services in the United States—Associated Pacific Basin that are set forth in the 1998 report entitled Pacific Partnerships for Health: Charting a New Course.

(2) Report.— An agreement described in paragraph (1) shall require the Health and Medicine Division to submit to the Secretary and to Congress, not later than 2 years after the date of the enactment of the Health Equity and Accountability Act of 2026, a report containing a description of the results of the study conducted under paragraph (1), including the conclusions and recommendations of the Health and Medicine Division for each of the items described in subparagraphs (A) through (D) of such paragraph.

(f) Authorization of appropriations.— To carry out this section, there are authorized to be appropriated such sums as may be necessary for fiscal years 2027 through 2031.”.

(a) Skilled nursing Facilities Quality Reporting.— Section 1819 of the Social Security Act (42 U.S.C. 1395i–3) is amended by adding at the end the following new subsection:

“(l) Requirements relating to reporting during public health emergencies.— During a public health emergency declared by the Secretary pursuant to section 319 of the Public Health Service Act, a skilled nursing facility shall, not later than 1 year after the first day of such declaration, and monthly thereafter during the application of such declaration, submit to the Secretary the following information, with respect to such facility and the residents of such facility:

(1) Information described in section 483.80(g)(1) of title 42, Code of Federal Regulations.

(2) The age, race, ethnicity, sex, sexual orientation, gender identity, socioeconomic status, disability status, and preferred language of the residents of such skilled nursing facility.”.

(b) Transparency of demographic information in certain settings.—

(1) Demographic information.— The Secretary of Health and Human Services shall post the following information with respect to skilled nursing facilities (as defined in section 1819(a) of the Social Security Act (42 U.S.C. 1395i–3(a))), congregate care settings (including skilled nursing facilities, assisted living facilities, prisons and jails, residential behavioral health care and psychiatric facilities, and facilities providing services for aging adults and people with disabilities), and nursing facilities (as defined in section 1919(a) of such Act (42 U.S.C. 1396r(a))) on the Nursing Home Compare website (as described in section 1819(i) of such Act (42 U.S.C. 1395i–3(i))), or a successor website, aggregated by State:

(A) The age, race, ethnicity, sex, sexual orientation, gender identity, socioeconomic status, disability status, and preferred language of the residents of such skilled nursing facilities, congregate care settings (including skilled nursing facilities, assisted living facilities, prisons and jails, residential behavioral health care and psychiatric facilities, and facilities providing services for aging adults and people with disabilities), and nursing facilities with suspected or confirmed infections, including residents previously treated for COVID–19.

(B) The age, race, ethnicity, sex, sexual orientation, gender identity, socioeconomic status, disability status, and preferred language relating to total deaths and public health emergency-related deaths among residents of such skilled nursing facilities, congregate settings (including skilled nursing facilities, assisted living facilities, prisons and jails, residential behavioral health care and psychiatric facilities, and facilities providing services for aging adults and people with disabilities), and nursing facilities.

(2) Confidentiality.— Any information reported under this subsection that is made available to the public shall be made so available in a manner that protects the identity of residents of skilled nursing facilities, congregate care settings (including skilled nursing facilities, assisted living facilities, prisons and jails, residential behavioral health care and psychiatric facilities, and facilities providing services for aging adults and people with disabilities), and nursing facilities.

(3) Implementation.— Notwithstanding any other provision of law, the Secretary of Health and Human Services may implement the provisions of this subsection by program instruction or otherwise.

(c) Equitable data collection and disclosure regarding pandemics.— Part A of title XI of the Social Security Act (42 U.S.C. 1301 et seq.) as amended by section 1003, is further amended by adding at the end the following new section:

“1150E. Equitable data collection and disclosure regarding pandemics.—

(a) In general.— Not later than 60 days after the Secretary submits to Congress written notification of the determination that a disease or disorder presents a public health emergency or that a public health emergency otherwise exists, subject to subsections (b) and (c), the Secretary, acting through the Director of the Centers for Disease Control and Prevention and the Administrator of the Centers for Medicare & Medicaid Services and in consultation with the Director of the Indian Health Service, shall collect and make publicly available on the website of the Centers for Disease Control and Prevention and the Centers for Medicare & Medicaid Services, and update every day during a pandemic, data collected across all surveillance systems relating to a public health emergency declared under section 319 of the Public Health Service Act that is caused by a disease (as determined by the Secretary), disaggregated by race, ethnicity, sex, sexual orientation, gender identity, age, preferred language, socioeconomic status, disability status, and county. Such data shall include the following:

(1) Data relating to all testing for the pathogen or pathogens causing the pandemic, including the number of individuals tested and the number of tests that were positive.

(2) Data relating to treatment for the pathogen causing the pandemic, including hospitalizations and intensive care unit admissions.

(3) Data relating to pandemic outcomes, including total fatalities and case fatality rates (expressed as the proportion of individuals who were infected with the pathogen causing the pandemic and died from the pathogen).

(4) In the case a vaccine is developed in response to a pandemic, data relating to such vaccination, including—

(A) the number of vaccines administered;

(B) the number of vaccinations offered, accepted, and refused;

(C) the most common reasons for refusal; and

(D) the percentage of vaccine doses allocated and administered to each priority group.

(b) Application of certain standards with respect to data collection.— To the extent practicable, data collected under subsection (a) shall follow standards developed by the Department of Health and Human Services Office of Minority Health and be collected, analyzed, and reported in accordance with the standards promulgated by the Assistant Secretary for Planning and Evaluation under title XXXI of the Public Health Service Act.

(c) Privacy.— In publishing data pursuant to subsection (a), the Secretary shall take all necessary steps to protect the privacy of individuals whose information is included in such data, including—

(1) complying with privacy protections provided under the regulations promulgated under section 264(c) of the Health Insurance and Accountability Act of 1996; and

(2) protections from all inappropriate internal use by an entity that collects, stores, or receives the data, including use of such data in determinations of eligibility (or continued eligibility) in health plans, and from inappropriate uses.”.

(d) Report requirements following public health emergencies.—

(1) Publicly available summary.— Not later than 60 days after the date on which the Secretary of Health and Human Services certifies that a public health emergency declared under section 319 of the Public Health Service Act has ended, the Secretary shall make publicly available on the website of the Department of Health and Human Services a summary of the final statistics related to such emergency.

(2) Report to Congress.— Not later than 60 days after the date on which the Secretary of Health and Human Services certifies that a public health emergency declared under section 319 of the Public Health Service Act has ended, the Secretary shall submit to the Committee on Health, Education, Labor, and Pensions and the Committee on Finance of the Senate and the Committee on Energy and Commerce and the Committee on Ways and Means of the House of Representatives a report—

(A) describing the testing, hospitalization, mortality rates, vaccination rates, and preferred language of patients associated with the pandemic by race and ethnicity, rural and urban areas (as defined in section 1886(d)(2)(D) of the Social Security Act (42 U.S.C. 1395ww(d)(2)(D))), and congregate care settings (including skilled nursing facilities, assisted living facilities, prisons and jails, residential behavioral health care and psychiatric facilities, and facilities providing services for aging adults and people with disabilities) and noncongregate care settings (as such terms are defined by the Secretary); and

(B) proposing evidenced-based response strategies to safeguard the health of these communities in future pandemics.

(a) In general.— Not later than 30 days after the date of enactment of this Act, the Secretary of Health and Human Services (referred to in this section as the “Secretary”) shall establish a commission, to be known as the “Commission on Ensuring Data for Health Equity” (referred to in this section as the “Commission”) to provide clear and robust guidance to improve the collection, analysis, and use of demographic data in responding to future public health emergencies.

(b) Membership and Chairperson.—

(1) Membership.— The Commission shall be composed of—

(A) the Assistant Secretary for Preparedness and Response;

(B) the Director of the Centers for Disease Control and Prevention;

(C) the Director of the National Institutes of Health;

(D) the Commissioner of Food and Drugs;

(E) the Administrator of the Federal Emergency Management Agency;

(F) the Director of the National Institute on Minority Health and Health Disparities;

(G) the Director of the Indian Health Service;

(H) the Administrator of the Centers for Medicare & Medicaid Services;

(I) the Director of the Agency for Healthcare Research and Quality;

(J) the Surgeon General;

(K) the Administrator of the Health Resources and Services Administration;

(L) the Director of the Office of Minority Health;

(M) the Director of the Office on Women’s Health;

(N) the Chairperson of the National Council on Disability;

(O) at least 4 State, local, territorial, and Tribal public health officials representing departments of public health, or an Urban Indian health representative, who shall represent jurisdictions from different regions of the United States with relatively high concentrations of historically marginalized populations and rural populations, to be appointed by the Secretary;

(P) the National Coordinator for Health Information Technology;

(Q) at least 3 independent individuals with expertise on racially and ethnically diverse representation with knowledge or field experience with community-based participatory research on racial and ethnic disparities in public health, to be appointed by the Secretary; and

(R) at least 4 individuals with expertise on health equity and demographic data disparities with knowledge of, or field experience in, language, disability status, sex, sexual orientation, gender identity, or socioeconomic status.

(2) Chairperson.— The Assistant Secretary for Preparedness and Response shall serve as the Chairperson of the Commission.

(c) Duties.— The Commission shall—

(1) examine barriers to collecting, analyzing, and using demographic data in public health;

(2) determine how to best use such data to promote health equity across the United States and reduce racial, Tribal, and other demographic disparities in health outcomes;

(3)

(A) gather available data related to treatment of individuals with disabilities during the COVID–19 pandemic and other public health emergencies, including access to vaccinations, denial of treatment for preexisting conditions, removal or denial of disability related equipment (including ventilators and continuous positive airway pressure (commonly referred to as “CPAP”) machines), and data on completion of do-not-resuscitate orders; and

(B) identify barriers to obtaining accurate and timely data related to treatment of such individuals;

(4) solicit input from public health officials, community-connected organizations, health care providers, State and local agency officials, Tribal officials, and other experts on barriers to, and best practices for, collecting demographic data; and

(5) recommend policy changes that the data indicates are necessary to reduce demographic disparities in health outcomes.

(d) Report.— Not later than 1 year after the date of the enactment of this Act, the Commission shall submit to Congress, and publish on the website of the Department of Health and Human Services, a report containing—

(1) the findings of the Commission pursuant to subsection (c);

(2) to the extent possible, an analysis of—

(A) racial and other demographic disparities in COVID–19 mortality, including an analysis of comorbidities and case fatality rates;

(B) sex, sexual orientation, and gender identity disparities in COVID–19 treatment and mortality; and

(C) Federal Government policies that disparately exacerbate the COVID–19 impact, and recommendations to improve racial and other demographic disparities in health outcomes;

(3) an analysis of COVID–19 treatment of individuals with disabilities, including equity of access to treatment and equipment and intersections of disability status with other demographic factors, including race;

(4) an analysis of what demographic data is currently being collected, the accuracy of that data and any gaps, how this data is currently being used to inform efforts to combat COVID–19, and what resources are needed to supplement existing public health data collection; and

(5) the Commission’s recommendations with respect to—

(A) how to enhance State, local, territorial, and Tribal capacity to conduct public health research on COVID–19 and in future public health emergencies, with a focus on expanded capacity to analyze data on disparities correlated with race, ethnicity, income, sex, sexual orientation, gender identity, age, disability status, specific geographic areas, and other relevant demographic characteristics;

(B) how to collect, process, and disclose to the public the data described in subparagraph (A) in a way that maintains individual privacy while helping direct the State, local, and Tribal response to public health emergencies;

(C) how to improve demographic data collection related to COVID–19 and other public health emergencies in the short-term and long-term, including how to continue to grow and value the Tribal sovereignty of data and information concerning urban and rural Tribal communities;

(D) how to improve transparency and equity of treatment for individuals with disabilities during the COVID–19 public health emergency and future public health emergencies; and

(E) how to support State, local, and Tribal capacity to eliminate barriers to vaccinations, testing, and treatment during the COVID–19 public health emergency and future public health emergencies.

(e) Staff of commission.—

(1) Additional staff.— The Chairperson of the Commission may appoint and fix the pay of additional staff to the Commission as the Chairperson considers appropriate.

(2) Applicability of certain civil service laws.— The staff of the Commission may be appointed without regard to the provisions of title 5, United States Code, governing appointments in the competitive service, and may be paid without regard to the provisions of chapter 51 and subchapter III of chapter 53 of that title relating to classification and General Schedule pay rates.

(3) Detailees.— Any Federal Government employee may be detailed to the Commission without reimbursement from the Commission, and the detailee shall retain the rights, status, and privileges of his or her regular employment without interruption.

(f) Coordination with other efforts.— The Secretary shall, in establishing the Commission under this section, take such steps as may be necessary to ensure that the work of the Commission does not overlap with, or otherwise duplicate, other Federal Government efforts with respect to ensuring health equity in data collection in public health emergencies.

(g) Authorization of appropriations.— There are authorized to be appropriated such sums as may be necessary to carry out this section.

(a) In general.— Not later than 30 days after the date of enactment of this Act, the Secretary of Health and Human Services (referred to in this section as the “Secretary”) shall establish a Task Force to be known as the “Task Force on Preventing AI and Algorithmic Bias in Health Care” (referred to in this section as the “Task Force”) to provide clear and robust guidance on how to ensure that the development and integration of artificial intelligence and algorithmic technologies within the health care service delivery process does not exacerbate health disparities and inequities, expands access to health care services, and improves health care delivery.

(b) Membership and Chairperson.—

(1) Membership.— The Task Force shall be composed of—

(A) the Chief Information Officer of the Department of Health and Human Services;

(B) the Director of the Centers for Disease Control and Prevention;

(C) the Director of the National Institutes of Health;

(D) the Commissioner of Food and Drugs;

(E) the Administrator of the Federal Emergency Management Agency;

(F) the Director of the National Institute on Minority Health and Health Disparities;

(G) the Director of the Indian Health Service;

(H) the Administrator of the Centers for Medicare & Medicaid Services;

(I) the Director of the Agency for Healthcare Research and Quality;

(J) the Surgeon General;

(K) the Administrator of the Health Resources and Services Administration;

(L) the Director of the Office of Minority Health;

(M) the Director of the Office on Women’s Health;

(N) the Chairperson of the National Council on Disability;

(O) the National Coordinator for Health Information Technology;

(P) at least 4 State, local, territorial, and Tribal public health officials representing departments of public health, or an Urban Indian health representative, who shall represent jurisdictions from different regions of the United States with relatively high concentrations of historically marginalized populations, to be appointed by the Secretary;

(Q) at least 3 independent individuals with expertise on racially and ethnically diverse representation with knowledge or field experience with community-based participatory research on racial and ethnic disparities in public health, to be appointed by the Secretary; and

(R) at least 4 individuals with expertise on health equity and demographic data disparities with knowledge of, or field experience in, language, disability status, sex, sexual orientation, gender identity, or socioeconomic status.

(2) Chairperson.— The Chief Information Officer of the Department of Health and Human Services (or the Chief Information Officer’s designee) shall serve as the Chairperson of the Task Force.

(c) Duties.— The Task Force shall—

(1) examine artificial intelligence and algorithms in the health care service sector, including the health care delivery process relative to the use of autonomous human decision makers;

(2) identify the risks of health care system utilization of artificial intelligence and algorithms in terms of civil rights, civil liberties, and discriminatory bias in health care access, quality, and outcomes; and

(3) prepare and submit the report under subsection (d).

(d) Report.— Not later than 1 year after the date of enactment of this Act, the Task Force shall—

(1) submit a written report of the findings of the examination under subsection (c)(1) and recommendations to Congress with respect to implementation of artificial intelligence and algorithms in health care delivery and mitigation of the risks associated with that implementation; and

(2) publish such report on the website of the Department of Health and Human Services.

(e) Public comment.— Not later than 60 days after the date of the enactment of this Act, the Task Force shall publish in the Federal Register a notice providing for a public comment period on the duties and activities of the Task Force of not less than 90 days, beginning on the date of that publication.

(f) Staff of commission.—

(1) Additional staff.— The Chairperson of the Task Force may appoint and fix the pay of additional staff to the Task Force as the Chairperson considers appropriate.

(2) Applicability of certain civil service laws.— The staff of the Task Force may be appointed without regard to the provisions of title 5, United States Code, governing appointments in the competitive service, and may be paid without regard to the provisions of chapter 51 and subchapter III of chapter 53 of that title relating to classification and General Schedule pay rates.

(3) Detailees.— Any Federal Government employee may be detailed to the Task Force without reimbursement from the Task Force, and the detailee shall retain the rights, status, and privileges of his or her regular employment without interruption.

(a) Study required.— The Secretary of Health and Human Services (referred to in this section as the “Secretary”) shall conduct or support a comprehensive study regarding the unique health patterns and outcomes of MENA populations.

(b) Requirements for study.— The comprehensive study under subsection (a) shall include an enumeration of MENA populations across the United States, disaggregated by subpopulation, and with respect to each such population and subpopulation—

(1) the rates of—

(A) health risk factors, including—

(i) behaviors, such as tobacco use, excessive alcohol consumption, physical inactivity, and unhealthy diet;

(ii) physiological factors, such as obesity, diabetes, high blood pressure, high blood sugar, and high cholesterol;

(iii) environmental factors, such as exposure to toxic chemicals, air and water pollution, and unsafe working conditions, including prevalence of work-related injuries;

(iv) genetic factors, such as family history of chronic diseases, presence of specific gene mutations, and racial and ethnic predisposition to certain conditions;

(v) demographic characteristics, such as age, geographic location, and English language proficiency; and

(vi) social determinants of health, such as household income, health insurance coverage, socioeconomic status, education level, housing instability, educational and employment opportunities, and access to culturally and linguistically appropriate service providers;

(B) prevalence of chronic disease or illness, including—

(i) cancers, such as breast, lung, cervical, prostate, colorectal, liver, stomach, and oral cancer;

(ii) cardiovascular conditions, such as heart disease, atrial fibrillation, and stroke;

(iii) respiratory conditions, such as asthma, chronic obstructive pulmonary disease, and lung disease;

(iv) musculoskeletal conditions, such as osteoporosis and carpal tunnel syndrome;

(v) neurological conditions, such as Parkinson’s disease, Alzheimer’s and other related dementias, epilepsy, and cerebral palsy;

(vi) infectious diseases, such as HIV/AIDS, hepatitis B and C, and tuberculosis; and

(vii) autoimmune diseases, such as lupus, multiple sclerosis, ulcerative colitis, and rheumatoid arthritis;

(C) prevalence of disability and disorder, including—

(i) vision impairments, such as blindness and low vision;

(ii) hearing conditions, such as deafness and varying degrees of hearing loss;

(iii) physical impairments, such as musculoskeletal conditions, amputation, paralysis, repetitive strain injuries, and other conditions that affect movement or require assistive devices;

(iv) intellectual or developmental conditions, such as Down syndrome, Prader-Willi syndrome, Angelman syndrome, autism, and attention-deficit/hyperactive disorder (ADHD), as well as other conditions that affect cognitive abilities, learning, and adaptive behaviors;

(v) mental or behavioral conditions, such as depression, anxiety, insomnia, sleep apnea, bipolar disorder, schizophrenia, and traumatic brain injury;

(vi) substance use disorders, such as disorders in use of alcohol, opioids, stimulants, and cannabis, and risk factors stemming from such disorders, such as liver damage and gastrointestinal issues;

(vii) genetic or blood disorders, such as sickle cell anemia, G6PD deficiency, hypertension, and thalassemia; and

(viii) endocrine disorders, such as diabetes, polycystic ovary syndrome (PCOS), and hypothyroidism;

(D) maternal and reproductive health outcomes, including maternal morbidity and mortality, infertility, and postpartum depression;

(E) nutritional health outcomes, including malnutrition and vitamin D and iron deficiencies, among other vitamin deficiencies;

(F) child and adolescent health outcomes, such as pediatric developmental delays, childhood obesity, and early-onset chronic conditions;

(G) dental and oral health outcomes, including tooth loss, gum disease, and tooth decay;

(H) domestic violence, dating violence, sexual assault, sexual harassment, and stalking; and

(I) morbidity and mortality, including the rates of morbidity and mortality associated with the rates referenced in subparagraphs (A) through (H);

(2) analysis of—

(A) the factors and conditions that contribute most to—

(i) the rates described in paragraph (1); and

(ii) the rates by which MENA subpopulations reported the outcomes referenced in subparagraphs (B) and (C) as a disease, illness, disorder, or disability;

(B) the leading causes of morbidity and mortality and pregnancy-associated morbidity and mortality;

(C) the extent to which access to health care facilities contributes to the associated outcomes of care, including the rates described in paragraph (1); and

(D) the disparities between MENA subpopulations and between the aggregate MENA population and other racial and ethnic populations in the rates described in paragraph (1);

(3) analysis, enumeration, or quantification of any other health or health-related parameters the Secretary determines necessary; and

(4) analysis of the extent to which any or all of the design, implementation, and evaluation of Federal health programs contribute to the health factors, outcomes, and conditions described in paragraphs (1) through (3).

(c) Consultation.— The Secretary shall—

(1) carry out this section in consultation, as appropriate, with the Director of the Census Bureau, the Director of the Centers for Disease Control and Prevention, the Director of the National Institutes of Health, the Assistant Secretary for Mental Health and Substance Use, and other stakeholders (including community-based organizations); and

(2) determine through such consultation the subpopulations to be used for purposes of disaggregation of data pursuant to subsection (b).

(d) Online portal.— Upon conclusion of the comprehensive study under this section, the Secretary shall establish a public online portal to catalogue the results of the study, its underlying data, and information in the report submitted pursuant to subsection (e)(2).

(e) Reporting.—

(1) Interim report.— Not later than 2 years after the date of enactment of this Act, the Secretary shall submit to Congress a report outlining the challenges associated with, and progress toward implementing, health data collection for MENA populations as a distinct category and the plan for completing a comprehensive study regarding the unique health patterns and outcomes of MENA populations.

(2) Final report.— Not later than 30 days after the conclusion of the comprehensive study under this section, and not later than 2 years after the date of submission of the interim report under paragraph (1), the Secretary shall submit to Congress a report describing—

(A) the results of the study conducted under this section; and

(B) the rulemakings and other actions the agencies described in subsection (c)(1) can undertake to more equitably include MENA individuals in their programs, including whether and to what extent additional resources are needed to increase rates of response among MENA populations to Federal health surveys.

(f) Privacy.—

(1) In general.— In carrying out the comprehensive study under this section, the Secretary shall implement robust privacy protections to safeguard the personal data of the individuals involved.

(2) Minimum protections.— The privacy protections referred to in paragraph (1) include the following:

(A) Personally identifiable information, such as names or addresses, shall not be collected when unnecessary for the purposes of the study.

(B) Any personally identifiable information that is collected shall be securely destroyed upon completion of the intended use of such information.

(C) All privacy protections and data handling procedures shall be clearly communicated to any individuals who may be subjects of the study, including through informed consent if applicable.

(3) Prohibition on inclusion of PII in online portal or reports.— The Secretary shall not include any personally identifiable information on the online portal under subsection (d) or in the reports under subsection (e).

(g) Violations.— Any person who, by virtue of an official position or affiliation with the Secretary— shall be guilty of a misdemeanor and fined not more than $25,000.

(1) has possession of, or access to, any record containing individually identifiable information the disclosure of which is prohibited by or under this section; and

(2) knowingly discloses such a record to any person or agency not entitled to receive the record,

(h) Definitions.— In this section:

(1) MENA.— The term MENA, with respect to individuals or populations, includes individuals or populations who identify with or belong to one or more nationalities or ethnic groups originating in a country (or portion thereof) in the Middle Eastern and North African region (such as Lebanese, Iranians, Egyptians, Moroccans, Yemenis, Chaldeans, Imazighen, Kurds, Palestinians, and Yazidis).

(2) Personally identifiable information defined.— The term personally identifiable information means individually identifying information for or about an individual, including information likely to disclose the location or specific identity of a participating individual, regardless of whether the information is encoded, encrypted, hashed, or otherwise protected, including—

(A) a first and last name;

(B) a home or other physical address;

(C) contact information (including a postal, email or internet protocol address, or telephone or facsimile number);

(D) a social security number, driver license number, passport number, or student identification number; and

(E) any other information, including date of birth, racial or ethnic background, or religious affiliation, that would serve to identify any individual.

(i) Authorization of appropriations.— There are authorized to be appropriated such sums as may be necessary to carry out this section.

Section 505(d) of the Public Health Service Act (42 U.S.C. 290aa–4(d)) is amended by adding at the end the following:

“(3) Inclusion of Puerto Rico.— Beginning with fiscal year 2027, annual surveys carried out under this section shall include Puerto Rico.”.