Sec. 101. Amendment to the Public Health Service Act
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Public Health Service Act It is the purpose of the amendment made by this section to promote data collection, analysis, and reporting by race, ethnicity, sex, primary language, sexual orientation, disability status, gender identity, age, and socioeconomic status among federally supported health programs. 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: Each health-related program shall— require the collection, by the agency or program involved, of data on the race, ethnicity, sex, primary language, sexual orientation, disability status, gender identity, age, and socioeconomic status of each applicant for and recipient of health-related assistance under such program, including— using, at a minimum, standards for data collection on race, ethnicity, sex, primary language, sexual orientation, gender identity, age, socioeconomic status, and disability status as each are developed under section 3101; collecting data for additional population groups if such groups can be aggregated into the race and ethnicity categories outlined by standards developed under section 3101; using, 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, entitled Race, Ethnicity, and Language Data:
Standardization for Health Care Quality Improvement ; and where practicable, collecting such data through self-reporting; with respect to the collection of the data described in subparagraph (A), for applicants and recipients who are minors, require communication assistance in speech or writing, and for applicants and recipients who are otherwise legally incapacitated, require that— such data be collected from the parent or legal guardian of such an applicant or recipient; and the primary language of the parent or legal guardian of such an applicant or recipient be collected; systematically analyze such data using the smallest appropriate units of analysis feasible to detect racial and ethnic disparities, as well as disparities along the lines of primary language, sex, disability status, sexual orientation, gender identity, age, and socioeconomic status in health and health care, and report the results of such analysis to the Secretary, the Director of the Office for Civil Rights, each agency listed in section 3101(c)(1), 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; provide such data to the Secretary on at least an annual basis; and ensure that the provision of assistance to an applicant or recipient of assistance is not denied or otherwise adversely affected because of the failure of the applicant or recipient to provide race, ethnicity, primary language, sex, sexual orientation, disability status, gender identity, age, and socioeconomic status data.
Nothing in this subsection shall be construed to— permit the use of information collected under this subsection in a manner that would adversely affect any individual providing any such information; or diminish any requirements, including such requirements in effect on or after the date of enactment of this section, on health care providers to collect data. This title does not authorize any health care provider, Federal official, or other entity to compel the disclosure of any data collected under this title.
The disclosure of any such data by an individual pursuant to this title shall be strictly voluntary. The Secretary shall ensure (through the promulgation of regulations or otherwise) that all data collected pursuant to subsection
(a)are protected— under the same privacy protections as the Secretary applies to other 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 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. The Secretary shall develop and implement a national plan to ensure the collection of data in a culturally and linguistically appropriate manner, to improve the collection, analysis, and reporting of racial, ethnic, sex, primary language, sexual orientation, disability status, gender identity, age, and socioeconomic status data at the Federal, State, territorial, Tribal, and local levels, including data to be collected under subsection (a), and to ensure that data collection activities carried out under this section are in compliance with standards developed under section 3101. The Data Council of the Department of Health and Human Services, in consultation with the National Committee on Vital Health Statistics, the Office of Minority Health, Office on Women’s Health, and other appropriate public and private entities, shall make recommendations to the Secretary concerning the development, implementation, and revision of the national plan. Such plan shall include recommendations on how to— implement subsection
(a)while minimizing the cost and administrative burdens of data collection and reporting; expand knowledge 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 assure equity and nondiscrimination in the quality of health care services; ensure that future patient record systems follow Federal standards promulgated under the Health Information Technology for Economic and Clinical Health Act 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 the 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 data, and disability status data, subject to all applicable privacy and confidentiality requirements, including HIPAA privacy and security law as defined in section 3009; and safeguard and prevent the misuse of data collected under subsection (a). Data collected under subsection
(a)shall be obtained, maintained, and presented (including for reporting purposes) in accordance with standards developed under section 3101. The Secretary, 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, and the Director of the National Institutes of Health, 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; and sharing data with external organizations for research and quality improvement purposes. In this section, the term health-related program means a program that is operated by the Secretary, or that receives funding or reimbursement, in whole or in part, either directly or indirectly from the Secretary— for activities under the Social Security Act for health care services; or for providing Federal financial assistance for health care, biomedical research, or health services research or for otherwise improving the health of the public. There are authorized to be appropriated to carry out this section such sums as may be necessary for each of fiscal years 2021 through 2025. 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, 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 3431. 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; and 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. 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 3431. There are authorized to be appropriated to carry out this section such sums as may be necessary for each of fiscal years 2021 through 2025. The Secretary, acting through the Director of the National Center for Health Statistics of the Centers for Disease Control and Prevention, and other agencies within the Department of Health and Human Services as the Secretary determines appropriate, shall develop and implement an ongoing and 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 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 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 the enactment of this section, the Secretary shall submit to the Congress a progress report, which shall include the national strategy described in subsection (a)(1). To carry out this section, there are authorized to be appropriated such sums as may be necessary for fiscal years 2021 through 2025. .