Sec. 1003. Collection of data for the Medicare program
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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: 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, and disability status of all applicants for social security benefits under title II or Medicare benefits under title XVIII.
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, whichever is more disaggregated. 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.
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). 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— such data be collected from the parent or legal guardian of such an applicant; and the primary language of the parent or legal guardian of such an applicant or recipient be used in collecting the 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. 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. With respect to the data transmitted under paragraph (6), the Administrator, in consultation with the Commissioner, shall— require that such data be uniformly analyzed and that such analysis be reported at least annually to Congress; 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; make such data available to researchers, under the protections outlined in paragraph (8); provide opportunities to individuals enrolled for Medicare benefits under title XVIII to submit updated data; and ensure that the provision of assistance or benefits to an applicant is not denied or otherwise adversely affected because of the failure of the applicant to provide any of the data collected under paragraph (1). The Commissioner shall ensure (through the promulgation of regulations or otherwise) that all data collected pursuant to paragraph
(1)is protected— 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 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. 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. 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. There are authorized to be appropriated to carry out this section $500,000,000 for fiscal year 2025 and $100,000,000 for each fiscal year thereafter. .
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