Title: Tribal Health Data Improvement Act of 2020
Policy area: Native Americans

Summary:
Tribal Health Data Improvement Act of 2020
This bill expands tribal access to public health care data and public health surveillance programs. It also reauthorizes through FY2025 the National Center for Health Statistics, which is part of the Centers for Disease Control and Prevention (CDC), and requires the CDC to take certain actions to address the collection and availability of health data for American Indians and Alaska Natives.
Specifically, the Department of Health and Human Services must (1) establish a strategy for providing data access to Indian tribes and tribal epidemiology centers; and (2) make available all requested data related to health care and public health surveillance programs and activities to the Indian Health Service, tribes, tribal organizations, and tribal epidemiology centers.
Next, the CDC must make grants to and enter into contracts with tribes, tribal organizations, and tribal epidemiology centers for data collection and related activities.
Among other things, the CDC must (1) develop guidance for state and local health agencies to improve birth and death record data for American Indians and Alaska Natives; (2) enter into cooperative agreements with tribes, tribal organizations, urban Indian organizations, and tribal epidemiology centers to analyze and address certain inaccuracies related to records for American Indians and Alaska Natives; (3) adopt uniform standards for the collection of health data on race and ethnicity; and (4) encourage states to enter into data sharing agreements with tribes and tribal epidemiology centers to improve the quality and accuracy of health data.


[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[S. 4562 Introduced in Senate (IS)]

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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 Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Tribal Health Data Improvement Act 
of 2020''.

SEC. 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 2020, 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''.

SEC. 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 a comma after ``the Departments of 
        Commerce and Labor'';
            (3) by inserting ``, Indian Tribes, Tribal organizations, 
        and epidemiology centers'' after ``State and local health 
        departments and agencies''; and
            (4) 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 2020 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.''.
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