Sec. 101. Amendment to the Public Health Service Act
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Public Health Service Act It is the purpose of this section to promote data collection, analysis, and reporting by race, ethnicity, sex, primary language, sexual orientation, disability status, gender identity, and socioeconomic status among federally supported health programs. Title XXXIV of the Public Health Service Act , as amended by titles II and III of this Act, is further amended by inserting after subtitle A the following: Each health-related program operated by or that receives funding or reimbursement, in whole or in part, either directly or indirectly from the Department of Health and Human Services 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, and socioeconomic status of each applicant for and recipient of health-related assistance under such program— using, at a minimum, the standards for data collection on race, ethnicity, sex, primary language, sexual orientation, disability status, gender identity, and socioeconomic status developed under section 3101; collecting data for additional population groups if such groups can be aggregated into the race and ethnicity categories outlined by the standards developed under section 3101; additionally referring, where practicable, to the standards developed by the Institute of Medicine in Race, Ethnicity, and Language Data:
Standardization for Health Care Quality Improvement ; and where practicable, 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, 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, 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 existing or future requirements 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 ( Public Law 104–191 ; 110 Stat. 2033) 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 appropriate and competent manner, to improve the collection, analysis, and reporting of racial, ethnic, sex, primary language, sexual orientation, disability status, gender identity, 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 the 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 awareness among Federal agencies, States, territories, Indian tribes, health providers, health plans, health insurance issuers, and the general public that data collection, analysis, and reporting by race, ethnicity, primary language, sexual orientation, disability status, gender identity, and socioeconomic status is legal and necessary to assure equity and nondiscrimination in the quality of health care services; ensure that future patient record systems have data code sets for racial, ethnic, primary language, sexual orientation, disability status, gender identity, and socioeconomic status identifiers and that such identifiers can be retrieved from clinical records, including records transmitted electronically; 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 for racial and ethnic groups that comprise a significant proportion of the population of the State; provide researchers with greater access to racial, ethnic, primary language, sexual orientation, disability status, gender identity, and socioeconomic status data, subject to privacy and confidentiality regulations; 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 the standards developed under section 3101. The Secretary may, either directly or through grant or contract, provide technical assistance to enable a health care program or an entity operating under such program to comply with the requirements of this section. Assistance provided under this subsection may include assistance to— enhance or upgrade computer technology that will facilitate racial, ethnic, primary language, sexual orientation, disability status, gender identity, and socioeconomic status data collection and analysis; 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 the standards developed under section 3101; develop mechanisms for submitting collected data subject to existing privacy and confidentiality regulations; and develop educational programs to inform health insurance issuers, health plans, health providers, health-related agencies, and the general public that data collection and reporting by race, ethnicity, primary language, sexual orientation, disability status, gender identity, and socioeconomic status are legal and essential for eliminating health and health care disparities. The Secretary, acting through the Director of the Agency for Healthcare Research and Quality and in coordination with the Administrator of the Centers for Medicare & Medicaid Services, 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 and ethnic disparities in health and health care in public programs 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. References in this section— to primary language data, include spoken and written primary language data; and to primary language data collection activities, include identifying, collecting, storing, tracking, and analyzing primary language data and information on the methods used to meet the language access needs of limited-English-proficient individuals. In this section, the term health-related program mean a program— under the Social Security Act ( 42 U.S.C. 301 et seq. ) that pays for health care and services; and under this Act that provides Federal financial assistance for health care, biomedical research, or health services research and or is designed to improve the public’s health. There are authorized to be appropriated to carry out this section such sums as may be necessary for each of fiscal years 2015 through 2020. The Secretary shall establish an epidemiology center in each service area to carry out the functions described in subsection (b). Any new center established after the date of the enactment of the Health Equity and Accountability Act of 2014 may be operated under a grant authorized by subsection (d), but funding under such a grant shall not be divisible. In consultation with and upon the request of Indian tribes, tribal organizations, and urban Indian organizations, each service area epidemiology center established under this subsection shall, with respect to such service area— collect data relating to, and monitor progress made toward meeting, each of the health status objectives of the service, the Indian tribes, tribal organizations, and urban Indian organizations in the service area; evaluate existing delivery systems, data systems, and other systems that impact the improvement of Indian health; assist Indian tribes, tribal organizations, and urban Indian organizations in identifying their highest priority health status objectives and the services needed to achieve such objectives, based on epidemiological data; make recommendations for the targeting of services needed by the populations served; make recommendations to improve health care delivery systems for Indians and urban Indians; provide requested technical assistance to Indian tribes, tribal organizations, and urban Indian organizations in the development of local health service priorities and incidence and prevalence rates of disease and other illness in the community; and provide disease surveillance and assist Indian tribes, tribal organizations, and urban Indian organizations to promote public health. The Director of the Centers for Disease Control and Prevention shall provide technical assistance to the centers in carrying out the requirements of this subsection. The Secretary may make grants to Indian tribes, tribal organizations, urban Indian organizations, and eligible intertribal consortia to conduct epidemiological studies of Indian communities. An intertribal consortium is eligible to receive a grant under this subsection if— the intertribal consortium is incorporated for the primary purpose of improving Indian health; and the intertribal consortium is representative of the Indian tribes or urban Indian communities in which the intertribal consortium is located. An application for a grant under this subsection shall be submitted in such manner and at such time as the Secretary shall prescribe. An applicant for a grant under this subsection shall— demonstrate the technical, administrative, and financial expertise necessary to carry out the functions described in paragraph (5); consult and cooperate with providers of related health and social services in order to avoid duplication of existing services; and demonstrate cooperation from Indian tribes or urban Indian organizations in the area to be served. A grant awarded under paragraph
(1)may be used— to carry out the functions described in subsection (b); to provide information to and consult with tribal leaders, urban Indian community leaders, and related health staff on health care and health service management issues; and in collaboration with Indian tribes, tribal organizations, and urban Indian communities, to provide the service with information regarding ways to improve the health status of Indians. An epidemiology center operated by a grantee pursuant to a grant awarded under subsection
(d)shall be treated as a public health authority for purposes of the Health Insurance Portability and Accountability Act of 1996 ( Public Law 104–191 ; 110 Stat. 2033), as such entities are defined in part 164.501 of title 45, Code of Federal Regulations (or a successor regulation). The Secretary shall grant such grantees access to and use of data, data sets, monitoring systems, delivery systems, and other protected health information in the possession of the Secretary. .
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- Pub. L. 104-191
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Sec. 101
Amendment to the Public Health Service Act
Pub. L.Pub. L. 104-191
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