Tribal Health Data Improvement Act of 2021

IIB 117TH CONGRESS 1ST SESSION H. R. 3841 IN THE SENATE OF THE UNITED STATES JUNE 24, 2021 Received; read twice and referred to the Committee on Indian Affairs AN ACT To amend the Public Health Service Act with respect to the collection and availability of health data with respect to Indian Tribes, 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 VerDate Sep 11 2014 22:29 Jun 25, 2021 Jkt 019200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H3841.RFS H3841 kjohnson on DSK79L0C42PROD with BILLS 2 HR 3841 RFS SECTION 1. SHORT TITLE. 1 This Act may be cited as the ‘‘Tribal Health Data 2 Improvement Act of 2021’’. 3 SEC. 2. COLLECTION AND AVAILABILITY OF HEALTH DATA 4 WITH RESPECT TO INDIAN TRIBES. 5 (a) DATA COLLECTION.—Section 3101(a)(1) of the 6 Public Health Service Act (42 U.S.C. 300kk(a)(1)) is 7 amended— 8 (1) by striking ‘‘, by not later than 2 years 9 after the date of enactment of this title,’’; and 10 (2) in subparagraph (B), by inserting ‘‘Tribal,’’ 11 after ‘‘State,’’. 12 (b) DATA REPORTING AND DISSEMINATION.—Sec- 13 tion 3101(c) of the Public Health Service Act (42 U.S.C. 14 300kk(c)) is amended— 15 (1) by amending subparagraph (F) of para- 16 graph (1) to read as follows: 17 ‘‘(F) the Indian Health Service, Indian 18 Tribes, Tribal organizations, and epidemiology 19 centers authorized under the Indian Health 20 Care Improvement Act;’’; and 21 (2) in paragraph (3), by inserting ‘‘Indian 22 Tribes, Tribal organizations, and epidemiology cen- 23 ters,’’ after ‘‘Federal agencies,’’. 24 (c) PROTECTION AND SHARING OF DATA.—Section 25 3101(e) of the Public Health Service Act (42 U.S.C. 26 VerDate Sep 11 2014 22:29 Jun 25, 2021 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H3841.RFS H3841 kjohnson on DSK79L0C42PROD with BILLS 3 HR 3841 RFS 300kk(e)) is amended by adding at the end the following 1 new paragraphs: 2 ‘‘(3) DATA SHARING STRATEGY.—With respect 3 to data access for Tribal epidemiology centers and 4 Tribes, the Secretary shall create a data sharing 5 strategy that takes into consideration recommenda- 6 tions by the Secretary’s Tribal Advisory Committee 7 for— 8 ‘‘(A) ensuring that Tribal epidemiology 9 centers and Indian Tribes have access to the 10 data sources necessary to accomplish their pub- 11 lic health responsibilities; and 12 ‘‘(B) protecting the privacy and security of 13 such data. 14 ‘‘(4) TRIBAL PUBLIC HEALTH AUTHORITY.— 15 ‘‘(A) AVAILABILITY.—Beginning not later 16 than 180 days after the date of the enactment 17 of the Tribal Health Data Improvement Act of 18 2021, the Secretary shall make available to the 19 entities listed in subparagraph (B) all data that 20 is collected pursuant to this title with respect to 21 health care and public health surveillance pro- 22 grams and activities, including such programs 23 and activities that are federally supported or 24 conducted, so long as— 25 VerDate Sep 11 2014 22:29 Jun 25, 2021 Jkt 019200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H3841.RFS H3841 kjohnson on DSK79L0C42PROD with BILLS 4 HR 3841 RFS ‘‘(i) such entities request the data 1 pursuant to statute; and 2 ‘‘(ii) the data is requested for use— 3 ‘‘(I) consistent with Federal law 4 and obligations; and 5 ‘‘(II) to satisfy a particular pur- 6 pose or carry out a specific function 7 consistent with the purpose for which 8 the data was collected. 9 ‘‘(B) ENTITIES.—The entities listed in this 10 subparagraph are— 11 ‘‘(i) the Indian Health Service; 12 ‘‘(ii) Indian Tribes and Tribal organi- 13 zations; and 14 ‘‘(iii) epidemiology centers.’’. 15 (d) TECHNICAL UPDATES.—Section 3101 of the 16 Public Health Service Act (42 U.S.C. 300kk) is amend- 17 ed— 18 (1) by striking subsections (g) and (h); and 19 (2) by redesignating subsection (i) as subsection 20 (h). 21 (e) DEFINITIONS.—After executing the amendments 22 made by subsection (d), section 3101 of the Public Health 23 Service Act (42 U.S.C. 300kk) is amended by inserting 24 after subsection (f) the following new subsection: 25 VerDate Sep 11 2014 22:29 Jun 25, 2021 Jkt 019200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H3841.RFS H3841 kjohnson on DSK79L0C42PROD with BILLS 5 HR 3841 RFS ‘‘(g) DEFINITIONS.—In this section: 1 ‘‘(1) The term ‘epidemiology center’ means an 2 epidemiology center established under section 214 of 3 the Indian Health Care Improvement Act, including 4 such Tribal epidemiology centers serving Indian 5 Tribes regionally and any Tribal epidemiology center 6 serving Urban Indian organizations nationally. 7 ‘‘(2) The term ‘Indian Tribe’ has the meaning 8 given to the term ‘Indian tribe’ in section 4 of the 9 Indian Self-Determination and Education Assistance 10 Act. 11 ‘‘(3) The term ‘Tribal organization’ has the 12 meaning given to the term ‘tribal organization’ in 13 section 4 of the of the Indian Self-Determination 14 and Education Assistance Act. 15 ‘‘(4) 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 (f) TECHNICAL CORRECTION.—Section 3101(b) of 19 the Public Health Service Act (42 U.S.C. 300kk(b)) is 20 amended by striking ‘‘DATA ANALYSIS.—’’ and all that 21 follows through ‘‘For each federally’’ and inserting ‘‘DATA 22 ANALYSIS.—For each federally’’. 23 VerDate Sep 11 2014 22:29 Jun 25, 2021 Jkt 019200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H3841.RFS H3841 kjohnson on DSK79L0C42PROD with BILLS 6 HR 3841 RFS SEC. 3. IMPROVING HEALTH STATISTICS REPORTING WITH 1 RESPECT TO INDIAN TRIBES. 2 (a) TECHNICAL AID TO STATES AND LOCALITIES.— 3 Section 306(d) of the Public Health Service Act (42 4 U.S.C. 242k(d)) is amended by inserting ‘‘, Indian Tribes, 5 Tribal organizations, and epidemiology centers’’ after ‘‘ju- 6 risdictions’’. 7 (b) COOPERATIVE HEALTH STATISTICS SYSTEM.— 8 Section 306(e)(3) of the Public Health Service Act (42 9 U.S.C. 242k(e)(3)) is amended by inserting ‘‘, Indian 10 Tribes, Tribal organizations, and epidemiology centers’’ 11 after ‘‘health agencies’’. 12 (c) FEDERAL-STATE-TRIBAL COOPERATION.—Sec- 13 tion 306(f) of the Public Health Service Act (42 U.S.C. 14 242k(f)) is amended— 15 (1) by inserting ‘‘the Indian Health Service,’’ 16 before ‘‘the Departments of Commerce’’; 17 (2) by inserting a comma after ‘‘the Depart- 18 ments of Commerce and Labor’’; 19 (3) by inserting ‘‘, Indian Tribes, Tribal organi- 20 zations, and epidemiology centers’’ after ‘‘State and 21 local health departments and agencies’’; and 22 (4) by striking ‘‘he shall’’ and inserting ‘‘the 23 Secretary shall’’. 24 VerDate Sep 11 2014 22:29 Jun 25, 2021 Jkt 019200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H3841.RFS H3841 kjohnson on DSK79L0C42PROD with BILLS 7 HR 3841 RFS (d) REGISTRATION AREA RECORDS.—Section 1 306(h)(1) of the Public Health Service Act (42 U.S.C. 2 242k(h)(1)) is amended— 3 (1) by striking ‘‘in his discretion’’ and inserting 4 ‘‘in the discretion of the Secretary’’; and 5 (2) by striking ‘‘Hispanics, Asian Americans, 6 and Pacific Islanders’’ and inserting ‘‘American In- 7 dians and Alaska Natives, Hispanics, Asian Ameri- 8 cans, and Native Hawaiian and other Pacific Island- 9 ers’’. 10 (e) NATIONAL COMMITTEE ON VITAL AND HEALTH 11 STATISTICS.—Section 306(k) of the Public Health Service 12 Act (42 U.S.C. 242k(k)) is amended— 13 (1) in paragraph (3), by striking ‘‘, not later 14 than 60 days after the date of the enactment of the 15 Health Insurance Portability and Accountability Act 16 of 1996,’’ each place it appears; and 17 (2) in paragraph (7), by striking ‘‘Not later 18 than 1 year after the date of the enactment of the 19 Health Insurance Portability and Accountability Act 20 of 1996, and annually thereafter, the Committee 21 shall’’ and inserting ‘‘The Committee shall, on a bi- 22 ennial basis,’’. 23 (f) GRANTS FOR ASSEMBLY AND ANALYSIS OF DATA 24 ON ETHNIC AND RACIAL POPULATIONS.—Section 25 VerDate Sep 11 2014 22:29 Jun 25, 2021 Jkt 019200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H3841.RFS H3841 kjohnson on DSK79L0C42PROD with BILLS 8 HR 3841 RFS 306(m)(4) of the Public Health Service Act (42 U.S.C. 1 242k(m)(4)) is amended— 2 (1) in subparagraph (A)— 3 (A) by striking ‘‘Subject to subparagraph 4 (B), the’’ and inserting ‘‘The’’; and 5 (B) by striking ‘‘and major Hispanic sub- 6 population groups and American Indians’’ and 7 inserting ‘‘, major Hispanic subgroups, and 8 American Indians and Alaska Natives’’; and 9 (2) by amending subparagraph (B) to read as 10 follows: 11 ‘‘(B) In carrying out subparagraph (A), with respect 12 to American Indians and Alaska Natives, the Secretary 13 shall— 14 ‘‘(i) consult with Indian Tribes, Tribal organi- 15 zations, the Tribal Technical Advisory Group of the 16 Centers for Medicare & Medicaid Services main- 17 tained under section 5006(e) of the American Recov- 18 ery and Reinvestment Act of 2009, and the Tribal 19 Advisory Committee established by the Centers for 20 Disease Control and Prevention, in coordination with 21 epidemiology centers, to develop guidelines for State 22 and local health agencies to improve the quality and 23 accuracy of data with respect to the birth and death 24 records of American Indians and Alaska Natives; 25 VerDate Sep 11 2014 22:29 Jun 25, 2021 Jkt 019200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H3841.RFS H3841 kjohnson on DSK79L0C42PROD with BILLS 9 HR 3841 RFS ‘‘(ii) confer with Urban Indian organizations to 1 develop guidelines for State and local health agencies 2 to improve the quality and accuracy of data with re- 3 spect to the birth and death records of American In- 4 dians and Alaska Natives; 5 ‘‘(iii) enter into cooperative agreements with In- 6 dian Tribes, Tribal organizations, Urban Indian or- 7 ganizations, and epidemiology centers to address 8 misclassification and undersampling of American In- 9 dians and Alaska Natives with respect to— 10 ‘‘(I) birth and death records; and 11 ‘‘(II) health care and public health surveil- 12 lance systems, including, but not limited to, 13 data with respect to chronic and infectious dis- 14 eases, unintentional injuries, environmental 15 health, child and adolescent health, maternal 16 health and mortality, foodborne and waterborne 17 illness, reproductive health, and any other 18 notifiable disease or condition; 19 ‘‘(iv) encourage States to enter into data shar- 20 ing agreements with Indian Tribes, Tribal organiza- 21 tions, and epidemiology centers to improve the qual- 22 ity and accuracy of public health data; and 23 ‘‘(v) not later than 180 days after the date of 24 enactment of the Tribal Health Data Improvement 25 VerDate Sep 11 2014 22:29 Jun 25, 2021 Jkt 019200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H3841.RFS H3841 kjohnson on DSK79L0C42PROD with BILLS 10 HR 3841 RFS Act of 2021, and biennially thereafter, issue a report 1 on the following: 2 ‘‘(I) Which States have data sharing agree- 3 ments with Indian Tribes, Tribal organizations, 4 Urban Indian organizations, and Tribal epide- 5 miology centers to improve the quality and ac- 6 curacy of health data. 7 ‘‘(II) What the Centers for Disease Control 8 and Prevention is doing to encourage States to 9 enter into data sharing agreements with Indian 10 Tribes, Tribal organizations, Urban Indian or- 11 ganizations, and Tribal epidemiology centers to 12 improve the quality and accuracy of health 13 data. 14 ‘‘(III) Best practices and guidance for 15 States, Indian Tribes, Tribal organizations, 16 Urban Indian organizations, and Tribal epide- 17 miology centers that wish to enter into data 18 sharing agreements. 19 ‘‘(IV) Best practices and guidance for 20 local, State, Tribal, and Federal uniform stand- 21 ards for the collection of data on race and eth- 22 nicity.’’. 23 (g) DEFINITIONS.—Section 306 of the Public Health 24 Service Act (42 U.S.C. 242k) is amended— 25 VerDate Sep 11 2014 22:29 Jun 25, 2021 Jkt 019200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H3841.RFS H3841 kjohnson on DSK79L0C42PROD with BILLS 11 HR 3841 RFS (1) by redesignating subsection (n) as sub- 1 section (o); and 2 (2) by inserting after subsection (m) the fol- 3 lowing: 4 ‘‘(n) In this section: 5 ‘‘(1) The term ‘epidemiology center’ means an 6 epidemiology center established under section 214 of 7 the Indian Health Care Improvement Act, including 8 such Tribal epidemiology centers serving Indian 9 Tribes regionally and any Tribal epidemiology center 10 serving Urban Indian organizations nationally. 11 ‘‘(2) The term ‘Indian Tribe’ has the meaning 12 given to the term ‘Indian tribe’ in section 4 of the 13 Indian Self-Determination and Education Assistance 14 Act. 15 ‘‘(3) The term ‘Tribal organization’ has the 16 meaning given to the term ‘tribal organization’ in 17 section 4 of the Indian Self-Determination and Edu- 18 cation Assistance Act. 19 ‘‘(4) The term ‘Urban Indian organization’ has 20 the meaning given to that term in section 4 of the 21 Indian Health Care Improvement Act.’’. 22 (h) AUTHORIZATION OF APPROPRIATIONS.—Section 23 306(o) of the Public Health Service Act, as redesignated 24 by subsection (g), is amended to read as follows: 25 VerDate Sep 11 2014 22:29 Jun 25, 2021 Jkt 019200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\H3841.RFS H3841 kjohnson on DSK79L0C42PROD with BILLS 12 HR 3841 RFS ‘‘(o)(1) To carry out this section, there is authorized 1 to be appropriated $185,000,000 for each of the fiscal 2 years 2022 through 2026. 3 ‘‘(2) Of the amount authorized to be appropriated to 4 carry out this section for a fiscal year, the Secretary shall 5 not use more than 10 percent for the combined costs of— 6 ‘‘(A) administration of this section; and 7 ‘‘(B) carrying out subsection (m)(2).’’. 8 Passed the House of Representatives June 23, 2021. Attest: CHERYL L. JOHNSON, Clerk. VerDate Sep 11 2014 22:29 Jun 25, 2021 Jkt 019200 PO 00000 Frm 00012 Fmt 6652 Sfmt 6201 E:\BILLS\H3841.RFS H3841 kjohnson on DSK79L0C42PROD with BILLS