Sec. 1001. Strengthening data collection, improving data analysis, and expanding data reporting
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The purpose of the amendments made by this subsection is to 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. Section 902(a) of the Public Health Service Act ( 42 U.S.C. 299a(a) ) is amended— in paragraph (8), by striking and at the end; in paragraph (9), by striking the period at the end and inserting ; and ; and by adding at the end the following: cultural and linguistic competence of health care services and of data collection activities described under section 3101. .
Section 1707(g)(1) of the Public Health Service Act ( 42 U.S.C. 300u–6(g)(1) ) is amended to read as follows: The term racial and ethnic minority group means a group of individuals who are any of the following: American Indian or Alaska Native. Asian. Black or African American. Hispanic or Latino. Middle Eastern or North African. Native Hawaiian or Pacific Islander. 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). . 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) ). Not later than 2 years after the date of enactment of this Act, the Secretary of Health and Human Services shall— 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 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. Section 1707(b)(6) of the Public Health Service Act ( 42 U.S.C. 300u–6(b)(6) ) is amended by inserting and, to the extent practicable, subgroups of racial and ethnic minority groups after the health status of each minority group . Section 3001 of the Public Health Service Act ( 42 U.S.C. 300jj–11 ) is amended— in subsection (b)— in paragraph (10), by striking and at the end; in paragraph (11), by striking the period at the end and inserting ; and ; and by adding at the end the following: 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 by amending clause
(vii)in subsection (c)(3)(A) to read as follows: 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. . Section 3101 of the Public Health Service Act ( 42 U.S.C. 300kk ) is amended— in subsections (a)(1)(A), (a)(1)(C), (a)(2)(B), and (a)(2)(E), by striking and disability status and inserting sexual orientation, gender identity, age, disability status, and socioeconomic status ; in subsection (a)(1), by amending subparagraph
(D)to read as follows: data for additional population groups if such groups can be aggregated into the data collection standards described under paragraph (2). ; in subsection (a)(2)— in subparagraph (C)— in clause (i), by striking and at the end; in clause (ii)— by 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 by striking the semicolon at the end and inserting ; and ; and by adding at the end the following: 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; ; in subparagraph (D)(iii), by striking and at the end; in subparagraph (E), by striking the period at the end and inserting ; and ; and by adding at the end the following: use, where practicable, the standards developed by the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine (formerly known as the Institute of Medicine ) in the 2009 publication titled Race, Ethnicity, and Language Data: Standardization for Health Care Quality Improvement . ; and in subsection (a)(3), by amending subparagraph
(B)to read as follows: 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. . 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, 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— 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; 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; ensure that future patient record systems 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; 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; provide researchers with greater access to racial, ethnic, primary language, sex, sexual orientation, gender identity, age, socioeconomic status, and disability status data, 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) ); 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 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). Nothing in this section shall be construed to— 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; or 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. 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, and other disparities in health and health care in programs conducted or supported by such agencies by— identifying appropriate quality assurance mechanisms to monitor for health disparities; specifying the clinical, diagnostic, or therapeutic measures which should be monitored; developing new quality measures relating to racial and ethnic disparities and their overlap with other disparity factors in health and health care; identifying the level at which data analysis should be conducted; sharing data with external organizations for research and quality improvement purposes; and 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 purpose described in subsection (a)(1). 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 2025 through 2029. 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: 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. A grant provided under this section may be used to— enhance or upgrade computer technology that will facilitate collection, analysis, and reporting of racial, ethnic, primary language, sexual orientation, sex, gender identity, socioeconomic status, and disability status data; 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; develop mechanisms for submitting collected data subject to any applicable privacy and confidentiality regulations; 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, disability status, and socioeconomic status are legal and essential for eliminating health and health care disparities; and 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. To be eligible for grants under this section, an entity shall 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. There are authorized to be appropriated to carry out this section such sums as may be necessary for each of fiscal years 2025 through 2029. 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 strategy for oversampling underrepresented populations within the categories of race, ethnicity, sex, primary language, sexual orientation, disability status, gender identity, and socioeconomic status as determined appropriate by the Secretary in Federal health surveys and program data collections. Such national strategy shall include a strategy for oversampling of Middle Easterners and North Africans, Asian Americans, Native Hawaiians, and Pacific Islanders. In developing and implementing a national strategy, as described in paragraph (1), not later than 180 days after the date of the enactment of this section, the Secretary shall— consult with representatives of community groups, nonprofit organizations, nongovernmental organizations, and government agencies working with underrepresented populations; solicit the participation of representatives from other Federal departments and agencies, including subagencies of the Department of Health and Human Services; and 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. 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 strategy required by subsection (a)(1). To carry out this section, there are authorized to be appropriated such sums as may be necessary for each of fiscal years 2025 through 2029. . 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.
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- 42 USC 300u–6(g)(1)
- 89 FR 22182
- 42 USC 300u–6(g)
- 42 USC 300u–6(b)(6)
- 42 USC 300jj–11
- 42 USC 300jj–19(a)
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Sec. 1001
Strengthening data collection, improving data analysis, and expanding data reporting
Cite42 USC 300u–6(g)(1)
Fed. Reg.89 FR 22182
Cite42 USC 300u–6(g)
Cite42 USC 300u–6(b)(6)
Cite42 USC 300jj–11
Cites 9 · showing 8Cited by 0 across 0 sources