II 117th CONGRESS 1st Session S. 1397 IN THE SENATE OF THE UNITED STATES April 27, 2021 Ms. Smith (for herself, Ms. Murkowski , Mr. Tester , Mr. Daines , Ms. Warren , and Mr. Cramer ) introduced the following bill; which was read twice and referred to the Committee on Indian Affairs A BILL To amend the Public Health Service Act with respect to the collection and availability of health data with respect to Indian Tribes and Tribal organizations, and for other purposes.

1. Short title This Act may be cited as the Tribal Health Data Improvement Act of 2021 . 2. Collection and availability of health data with respect to Indian Tribes (a) Data collection Section 3101(a)(1) of the Public Health Service Act ( 42 U.S.C. 300kk(a)(1) ) is amended— (1) by striking , by not later than 2 years after the date of enactment of this title, ; and (2) in subparagraph (B), by inserting Tribal, after State, . (b) Data reporting and dissemination Section 3101(c) of the Public Health Service Act ( 42 U.S.C. 300kk(c) ) is amended— (1) by amending subparagraph (F) of paragraph (1) to read as follows: (F) the Indian Health Service, Indian Tribes, Tribal organizations, and epidemiology centers; ; and (2) in paragraph (3), by inserting Indian Tribes, Tribal organizations, epidemiology centers, after Federal agencies, . (c) Protection and sharing of data Section 3101(e) of the Public Health Service Act ( 42 U.S.C. 300kk(e) ) is amended— (1) in paragraph (2)— (A) by striking .. and inserting . ; (B) by striking The Secretary shall and inserting the following: (A) In general The Secretary shall ; and (C) by adding at the end the following: (B) Epidemiology centers and Indian Tribes With respect to data access for epidemiology centers and Indian Tribes, the Secretary shall establish a data sharing strategy, in consultation with the Secretary’s Tribal Advisory Committee, for purposes of providing access to data to the epidemiology centers and Indian Tribes that protect data privacy and security and data governance while ensuring that epidemiology centers and Indian Tribes have access to data sources necessary to accomplish their public health responsibilities and plans for use. ; and (2) by adding at the end the following new paragraph: (3) Tribal public health authority Beginning not later than 180 days after the date of the enactment of the Tribal Health Data Improvement Act of 2021 , the Secretary shall make available all requested data collected pursuant to this title with respect to health care and public health surveillance programs and activities, including such programs and activities that are federally supported or conducted, to— (A) the Indian Health Service; (B) Indian Tribes and Tribal organizations; and (C) epidemiology centers. . (d) Technical updates Section 3101 of the Public Health Service Act ( 42 U.S.C. 300kk ) is amended— (1) by striking subsections (g) and (h); and (2) by redesignating subsection (i) as subsection (h). (e) Definitions After executing the amendments made by subsection (d), section 3101 of the Public Health Service Act ( 42 U.S.C. 300kk ) is amended by inserting after subsection (f) the following new subsection: (g) Definitions In this section: (1) The term epidemiology center means an epidemiology center established under section 214 of the Indian Health Care Improvement Act, including any epidemiology center serving Indian Tribes regionally or serving urban Indian organizations nationally that is receiving funding from the Indian Health Service. (2) The terms Indian Tribe and Tribal organization have the meanings given to the terms Indian tribe and tribal organization , respectively, in section 4 of the Indian Self-Determination and Education Assistance Act. . (f) Technical correction Section 3101(b) of the Public Health Service Act ( 42 U.S.C. 300kk(b) ) is amended by striking Data analysis.— and all that follows through For each federally and inserting Data analysis.— For each federally . 3. Improving health statistics reporting with respect to Indian Tribes (a) Technical aid to States and localities Section 306(d) of the Public Health Service Act ( 42 U.S.C. 242k(d) ) is amended by inserting , Indian Tribes, Tribal organizations, and epidemiology centers after jurisdictions . (b) Cooperative health statistics system Section 306(e)(3) of the Public Health Service Act ( 42 U.S.C. 242k(e)(3) ) is amended by inserting , Indian Tribes, Tribal organizations, and epidemiology centers after health agencies . (c) Federal-State-Tribal cooperation Section 306(f) of the Public Health Service Act ( 42 U.S.C. 242k(f) ) is amended— (1) by inserting , the Indian Health Service, after Commerce and Labor ; (2) by inserting , Indian Tribes, Tribal organizations, and epidemiology centers after State and local health departments and agencies ; and (3) by striking he shall and inserting the Secretary shall . (d) Registration area records Section 306(h)(1) of the Public Health Service Act ( 42 U.S.C. 242k(h)(1) ) is amended— (1) by striking in his discretion and inserting in the discretion of the Secretary ; and (2) by striking Hispanics, Asian Americans, and Pacific Islanders and inserting American Indians and Alaska Natives, Hispanics, Asians, and Native Hawaiian and other Pacific Islanders . (e) National Committee on Vital and Health Statistics Section 306(k) of the Public Health Service Act ( 42 U.S.C. 242k(k) ) is amended— (1) in paragraph (3), by striking , not later than 60 days after the date of the enactment of the Health Insurance Portability and Accountability Act of 1996, each place it appears; and (2) in paragraph (7), by striking Not later than 1 year after the date of the enactment of the Health Insurance Portability and Accountability Act of 1996, and annually thereafter, the Committee shall and inserting The Committee shall, on a biennial basis, . (f) Grants for assembly and analysis of data on ethnic and racial populations Section 306(m)(4) of the Public Health Service Act ( 42 U.S.C. 242k(m)(4) ) is amended— (1) in subparagraph (A)— (A) by striking Subject to subparagraph (B), the and inserting The ; and (B) by striking and major Hispanic subpopulation groups and American Indians and inserting , major Hispanic subgroups, and American Indians and Alaska Natives ; and (2) by amending subparagraph (B) to read as follows: (B) In carrying out subparagraph (A), with respect to American Indians and Alaska Natives, the Secretary shall— (i) in consultation with Indian Tribes, Tribal organizations, the Tribal Technical Advisory Group of the Centers for Medicare & Medicaid Services maintained under section 5006(e) of the American Recovery and Reinvestment Act of 2009, and the Tribal Advisory Committee established by the Centers for Disease Control and Prevention, and in coordination with epidemiology centers, develop guidance for State and local health agencies to improve the quality and accuracy of data with respect to the birth and death records of American Indians and Alaska Natives; (ii) confer with urban Indian organizations to develop guidance for State and local health agencies to improve the quality and accuracy of data with respect to the birth and death records of American Indians and Alaska Natives; (iii) enter into cooperative agreements with Indian Tribes, Tribal organizations, Urban Indian organizations, and epidemiology centers to analyze and address misclassification and undersampling of American Indians and Alaska Natives in data systems at the Federal, State, and local levels, with respect to— (I) birth and death records; and (II) Federal, State, and local health care and public health surveillance systems, including with respect to chronic and infectious diseases, unintentional injuries, environmental health, child and adolescent health, maternal health and mortality, foodborne and waterborne illness, reproductive health, and any other notifiable disease or condition; (iv) adopt, based on local, statewide, Tribal, and national best practices, uniform standards for the collection of health data on race and ethnicity; (v) encourage States to enter into data sharing agreements with Indian Tribes and epidemiology centers to improve the quality and accuracy of public health data regarding American Indians and Alaska natives, including by addressing misclassification and undersampling of American Indians and Alaska Natives in State and local public health data systems, including with respect to vital statistics, chronic and infectious diseases, unintentional injuries, environmental health, child and adolescent health, maternal health and mortality, foodborne and waterborne illness, reproductive health, and any other notifiable disease or condition; (vi) encourage States to adopt, based on local, statewide, Tribal, and national best practices, uniform standards for the collection of health data on race and ethnicity; and (vii) 180 days after the date of enactment of the Tribal Health Data Improvement Act of 2021 and biennially thereafter, issue a report on— (I) which States have data sharing agreements with Indian Tribes, Tribal Organizations, urban Indian organizations, or epidemiology centers to improve the quality and accuracy of health data, listed by data system name; and (II) actions taken by the Director of the Centers for Disease Control and Prevention to encourage States to enter into data sharing agreements with Indian Tribes, Tribal Organizations, urban Indian organizations, and epidemiology centers to improve the quality and accuracy of health data. . (g) Definitions Section 306 of the Public Health Service Act ( 42 U.S.C. 242k ) is amended— (1) by redesignating subsection (n) as subsection (o); and (2) by inserting after subsection (m) the following: (n) In this section: (1) The term epidemiology center means an epidemiology center established under section 214 of the Indian Health Care Improvement Act, including any epidemiology center serving Indian Tribes regionally or serving urban Indian organizations nationally that is receiving funding from the Indian Health Service. (2) The terms Indian Tribe and Tribal organization have the meanings given to the terms Indian tribe and tribal organization , respectively, in section 4 of the Indian Self-Determination and Education Assistance Act. (3) The term Urban Indian organization has the meaning given to that term in section 4 of the Indian Health Care Improvement Act. . (h) Authorization of appropriations Section 306(o) of the Public Health Service Act, as redesignated by subsection (g), is amended to read as follows: (o) To carry out this section, there is authorized to be appropriated $185,000,000 for each of the fiscal years 2021 through 2025. .