Tribal Health Data Improvement Act of 2020

II 116TH CONGRESS 2D SESSION S. 4562 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. IN THE SENATE OF THE UNITED STATES SEPTEMBER 10, 2020 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. Be it enacted by the Senate and House of Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘Tribal Health Data 4 Improvement Act of 2020’’. 5 VerDate Sep 11 2014 18:12 Sep 11, 2020 Jkt 099200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\S4562.IS S4562 pamtmann on DSKBC07HB2PROD with BILLS 2 •S 4562 IS SEC. 2. COLLECTION AND AVAILABILITY OF HEALTH DATA 1 WITH RESPECT TO INDIAN TRIBES. 2 (a) DATA COLLECTION.—Section 3101(a)(1) of the 3 Public Health Service Act (42 U.S.C. 300kk(a)(1)) is 4 amended— 5 (1) by striking ‘‘, by not later than 2 years 6 after the date of enactment of this title,’’; and 7 (2) in subparagraph (B), by inserting ‘‘Tribal,’’ 8 after ‘‘State,’’. 9 (b) DATA REPORTING AND DISSEMINATION.—Sec- 10 tion 3101(c) of the Public Health Service Act (42 U.S.C. 11 300kk(c)) is amended— 12 (1) by amending subparagraph (F) of para- 13 graph (1) to read as follows: 14 ‘‘(F) the Indian Health Service, Indian 15 Tribes, Tribal organizations, and epidemiology 16 centers;’’; and 17 (2) in paragraph (3), by inserting ‘‘Indian 18 Tribes, Tribal organizations, epidemiology centers,’’ 19 after ‘‘Federal agencies,’’. 20 (c) PROTECTION AND SHARING OF DATA.—Section 21 3101(e) of the Public Health Service Act (42 U.S.C. 22 300kk(e)) is amended— 23 (1) in paragraph (2)— 24 (A) by striking ‘‘..’’ and inserting ‘‘.’’; 25 VerDate Sep 11 2014 18:12 Sep 11, 2020 Jkt 099200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\S4562.IS S4562 pamtmann on DSKBC07HB2PROD with BILLS 3 •S 4562 IS (B) by striking ‘‘The Secretary shall’’ and 1 inserting the following: 2 ‘‘(A) IN GENERAL.—The Secretary shall’’; 3 and 4 (C) by adding at the end the following: 5 ‘‘(B) EPIDEMIOLOGY CENTERS AND IN- 6 DIAN TRIBES.—With respect to data access for 7 epidemiology centers and Indian Tribes, the 8 Secretary shall establish a data sharing strat- 9 egy, in consultation with the Secretary’s Tribal 10 Advisory Committee, for purposes of providing 11 access to data to the epidemiology centers and 12 Indian Tribes that protect data privacy and se- 13 curity and data governance while ensuring that 14 epidemiology centers and Indian Tribes have 15 access to data sources necessary to accomplish 16 their public health responsibilities and plans for 17 use.’’; and 18 (2) by adding at the end the following new 19 paragraph: 20 ‘‘(3) TRIBAL PUBLIC HEALTH AUTHORITY.— 21 Beginning not later than 180 days after the date of 22 the enactment of the Tribal Health Data Improve- 23 ment Act of 2020, the Secretary shall make avail- 24 able all requested data collected pursuant to this 25 VerDate Sep 11 2014 18:12 Sep 11, 2020 Jkt 099200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S4562.IS S4562 pamtmann on DSKBC07HB2PROD with BILLS 4 •S 4562 IS title with respect to health care and public health 1 surveillance programs and activities, including such 2 programs and activities that are federally supported 3 or conducted, to— 4 ‘‘(A) the Indian Health Service; 5 ‘‘(B) Indian Tribes and Tribal organiza- 6 tions; and 7 ‘‘(C) epidemiology centers.’’. 8 (d) TECHNICAL UPDATES.—Section 3101 of the 9 Public Health Service Act (42 U.S.C. 300kk) is amend- 10 ed— 11 (1) by striking subsections (g) and (h); and 12 (2) by redesignating subsection (i) as subsection 13 (h). 14 (e) DEFINITIONS.—After executing the amendments 15 made by subsection (d), section 3101 of the Public Health 16 Service Act (42 U.S.C. 300kk) is amended by inserting 17 after subsection (f) the following new subsection: 18 ‘‘(g) DEFINITIONS.—In this section: 19 ‘‘(1) The term ‘epidemiology center’ means an 20 epidemiology center established under section 214 of 21 the Indian Health Care Improvement Act, including 22 any epidemiology center serving Indian Tribes re- 23 gionally or serving urban Indian organizations na- 24 VerDate Sep 11 2014 18:12 Sep 11, 2020 Jkt 099200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\S4562.IS S4562 pamtmann on DSKBC07HB2PROD with BILLS 5 •S 4562 IS tionally that is receiving funding from the Indian 1 Health Service. 2 ‘‘(2) The terms ‘Indian Tribe’ and ‘Tribal orga- 3 nization’ have the meanings given to the terms ‘In- 4 dian tribe’ and ‘tribal organization’, respectively, in 5 section 4 of the Indian Self-Determination and Edu- 6 cation Assistance Act.’’. 7 (f) TECHNICAL CORRECTION.—Section 3101(b) of 8 the Public Health Service Act (42 U.S.C. 300kk(b)) is 9 amended by striking ‘‘DATA ANALYSIS.—’’ and all that 10 follows through ‘‘For each federally’’ and inserting ‘‘DATA 11 ANALYSIS.—For each federally’’. 12 SEC. 3. IMPROVING HEALTH STATISTICS REPORTING WITH 13 RESPECT TO INDIAN TRIBES. 14 (a) TECHNICAL AID TO STATES AND LOCALITIES.— 15 Section 306(d) of the Public Health Service Act (42 16 U.S.C. 242k(d)) is amended by inserting ‘‘, Indian Tribes, 17 Tribal organizations, and epidemiology centers’’ after ‘‘ju- 18 risdictions’’. 19 (b) COOPERATIVE HEALTH STATISTICS SYSTEM.— 20 Section 306(e)(3) of the Public Health Service Act (42 21 U.S.C. 242k(e)(3)) is amended by inserting ‘‘, Indian 22 Tribes, Tribal organizations, and epidemiology centers’’ 23 after ‘‘health agencies’’. 24 VerDate Sep 11 2014 18:12 Sep 11, 2020 Jkt 099200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\S4562.IS S4562 pamtmann on DSKBC07HB2PROD with BILLS 6 •S 4562 IS (c) FEDERAL-STATE-TRIBAL COOPERATION.—Sec- 1 tion 306(f) of the Public Health Service Act (42 U.S.C. 2 242k(f)) is amended— 3 (1) by inserting ‘‘, the Indian Health Service,’’ 4 after ‘‘Commerce and Labor’’; 5 (2) by inserting a comma after ‘‘the Depart- 6 ments of Commerce and Labor’’; 7 (3) by inserting ‘‘, Indian Tribes, Tribal organi- 8 zations, and epidemiology centers’’ after ‘‘State and 9 local health departments and agencies’’; and 10 (4) by striking ‘‘he shall’’ and inserting ‘‘the 11 Secretary shall’’. 12 (d) REGISTRATION AREA RECORDS.—Section 13 306(h)(1) of the Public Health Service Act (42 U.S.C. 14 242k(h)(1)) is amended— 15 (1) by striking ‘‘in his discretion’’ and inserting 16 ‘‘in the discretion of the Secretary’’; and 17 (2) by striking ‘‘Hispanics, Asian Americans, 18 and Pacific Islanders’’ and inserting ‘‘American In- 19 dians and Alaska Natives, Hispanics, Asians, and 20 Native Hawaiian and other Pacific Islanders’’. 21 (e) NATIONAL COMMITTEE ON VITAL AND HEALTH 22 STATISTICS.—Section 306(k) of the Public Health Service 23 Act (42 U.S.C. 242k(k)) is amended— 24 VerDate Sep 11 2014 18:12 Sep 11, 2020 Jkt 099200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\S4562.IS S4562 pamtmann on DSKBC07HB2PROD with BILLS 7 •S 4562 IS (1) in paragraph (3), by striking ‘‘, not later 1 than 60 days after the date of the enactment of the 2 Health Insurance Portability and Accountability Act 3 of 1996,’’ each place it appears; and 4 (2) in paragraph (7), by striking ‘‘Not later 5 than 1 year after the date of the enactment of the 6 Health Insurance Portability and Accountability Act 7 of 1996, and annually thereafter, the Committee 8 shall’’ and inserting ‘‘The Committee shall, on a bi- 9 ennial basis,’’. 10 (f) GRANTS FOR ASSEMBLY AND ANALYSIS OF DATA 11 ON ETHNIC AND RACIAL POPULATIONS.—Section 12 306(m)(4) of the Public Health Service Act (42 U.S.C. 13 242k(m)(4)) is amended— 14 (1) in subparagraph (A)— 15 (A) by striking ‘‘Subject to subparagraph 16 (B), the’’ and inserting ‘‘The’’; and 17 (B) by striking ‘‘and major Hispanic sub- 18 population groups and American Indians’’ and 19 inserting ‘‘, major Hispanic subgroups, and 20 American Indians and Alaska Natives’’; and 21 (2) by amending subparagraph (B) to read as 22 follows: 23 VerDate Sep 11 2014 18:12 Sep 11, 2020 Jkt 099200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\S4562.IS S4562 pamtmann on DSKBC07HB2PROD with BILLS 8 •S 4562 IS ‘‘(B) In carrying out subparagraph (A), with respect 1 to American Indians and Alaska Natives, the Secretary 2 shall— 3 ‘‘(i) in consultation with Indian Tribes, Tribal 4 organizations, the Tribal Technical Advisory Group 5 of the Centers for Medicare & Medicaid Services 6 maintained under section 5006(e) of the American 7 Recovery and Reinvestment Act of 2009, and the 8 Tribal Advisory Committee established by the Cen- 9 ters for Disease Control and Prevention, and in co- 10 ordination with epidemiology centers, develop guid- 11 ance for State and local health agencies to improve 12 the quality and accuracy of data with respect to the 13 birth and death records of American Indians and 14 Alaska Natives; 15 ‘‘(ii) confer with urban Indian organizations to 16 develop guidance for State and local health agencies 17 to improve the quality and accuracy of data with re- 18 spect to the birth and death records of American In- 19 dians and Alaska Natives; 20 ‘‘(iii) enter into cooperative agreements with In- 21 dian Tribes, Tribal organizations, Urban Indian or- 22 ganizations, and epidemiology centers to analyze and 23 address misclassification and undersampling of 24 American Indians and Alaska Natives in data sys- 25 VerDate Sep 11 2014 18:12 Sep 11, 2020 Jkt 099200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\S4562.IS S4562 pamtmann on DSKBC07HB2PROD with BILLS 9 •S 4562 IS tems at the Federal, State, and local levels, with re- 1 spect to— 2 ‘‘(I) birth and death records; and 3 ‘‘(II) Federal, State, and local health care 4 and public health surveillance systems, includ- 5 ing with respect to chronic and infectious dis- 6 eases, unintentional injuries, environmental 7 health, child and adolescent health, maternal 8 health and mortality, foodborne and waterborne 9 illness, reproductive health, and any other 10 notifiable disease or condition; 11 ‘‘(iv) adopt, based on local, statewide, Tribal, 12 and national best practices, uniform standards for 13 the collection of health data on race and ethnicity; 14 ‘‘(v) encourage States to enter into data shar- 15 ing agreements with Indian Tribes and epidemiology 16 centers to improve the quality and accuracy of public 17 health data regarding American Indians and Alaska 18 natives, including by addressing misclassification 19 and undersampling of American Indians and Alaska 20 Natives in State and local public health data sys- 21 tems, including with respect to vital statistics, chron- 22 ic and infectious diseases, unintentional injuries, en- 23 vironmental health, child and adolescent health, ma- 24 ternal health and mortality, foodborne and water- 25 VerDate Sep 11 2014 18:12 Sep 11, 2020 Jkt 099200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\S4562.IS S4562 pamtmann on DSKBC07HB2PROD with BILLS 10 •S 4562 IS borne illness, reproductive health, and any other 1 notifiable disease or condition; 2 ‘‘(vi) encourage States to adopt, based on local, 3 statewide, Tribal, and national best practices, uni- 4 form standards for the collection of health data on 5 race and ethnicity; and 6 ‘‘(vii) 180 days after the date of enactment of 7 the Tribal Health Data Improvement Act of 2020 8 and biennially thereafter, issue a report on— 9 ‘‘(I) which States have data sharing agree- 10 ments with Indian Tribes, Tribal Organizations, 11 urban Indian organizations, or epidemiology 12 centers to improve the quality and accuracy of 13 health data, listed by data system name; and 14 ‘‘(II) actions taken by the Director of the 15 Centers for Disease Control and Prevention to 16 encourage States to enter into data sharing 17 agreements with Indian Tribes, Tribal Organi- 18 zations, urban Indian organizations, and epide- 19 miology centers to improve the quality and ac- 20 curacy of health data.’’. 21 (g) DEFINITIONS.—Section 306 of the Public Health 22 Service Act (42 U.S.C. 242k) is amended— 23 (1) by redesignating subsection (n) as sub- 24 section (o); and 25 VerDate Sep 11 2014 18:12 Sep 11, 2020 Jkt 099200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\S4562.IS S4562 pamtmann on DSKBC07HB2PROD with BILLS 11 •S 4562 IS (2) by inserting after subsection (m) the fol- 1 lowing: 2 ‘‘(n) In this section: 3 ‘‘(1) The term ‘epidemiology center’ means an 4 epidemiology center established under section 214 of 5 the Indian Health Care Improvement Act, including 6 any epidemiology center serving Indian Tribes re- 7 gionally or serving urban Indian organizations na- 8 tionally that is receiving funding from the Indian 9 Health Service. 10 ‘‘(2) The terms ‘Indian Tribe’ and ‘Tribal orga- 11 nization’ have the meanings given to the terms ‘In- 12 dian tribe’ and ‘tribal organization’, respectively, in 13 section 4 of the Indian Self-Determination and Edu- 14 cation Assistance Act. 15 ‘‘(3) The term ‘Urban Indian organization’ has 16 the meaning given to that term in section 4 of the 17 Indian Health Care Improvement Act.’’. 18 (h) AUTHORIZATION OF APPROPRIATIONS.—Section 19 306(o) of the Public Health Service Act, as redesignated 20 by subsection (g), is amended to read as follows: 21 ‘‘(o) To carry out this section, there is authorized to 22 be appropriated $185,000,000 for each of the fiscal years 23 2021 through 2025.’’. 24 Æ VerDate Sep 11 2014 18:12 Sep 11, 2020 Jkt 099200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6301 E:\BILLS\S4562.IS S4562 pamtmann on DSKBC07HB2PROD with BILLS