Title: Tribal Health Data Improvement Act of 2021
Policy area: Native Americans

Summary:
Tribal Health Data Improvement Act of 2021
This bill expands tribal access to public health care data and public health surveillance programs. It also reauthorizes through FY2026 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 requirements, the CDC must (1) develop guidelines 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 address certain inaccuracies related to records for American Indians and Alaska Natives; and (3) encourage states to enter into data sharing agreements with tribes, tribal organizations, and tribal epidemiology centers to improve the quality and accuracy of public health data.


[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[H.R. 3841 Introduced in House (IH)]

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117th CONGRESS
  1st Session
                                H. R. 3841

 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.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                             June 11, 2021

 Mr. Mullin (for himself and Mr. O'Halleran) introduced the following 
    bill; which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                                 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 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 2021''.

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 
                authorized under the Indian Health Care Improvement 
                Act;''; and
            (2) in paragraph (3), by inserting ``Indian Tribes, Tribal 
        organizations, and 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 by adding at the end 
the following new paragraphs:
            ``(3) Data sharing strategy.--With respect to data access 
        for Tribal epidemiology centers and Tribes, the Secretary shall 
        create a data sharing strategy that takes into consideration 
        recommendations by the Secretary's Tribal Advisory Committee 
        for--
                    ``(A) ensuring that Tribal epidemiology centers and 
                Indian Tribes have access to the data sources necessary 
                to accomplish their public health responsibilities; and
                    ``(B) protecting the privacy and security of such 
                data.
            ``(4) Tribal public health authority.--
                    ``(A) Availability.--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 to the entities listed in 
                subparagraph (B) all data that is 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, so long as--
                            ``(i) such entities request the data 
                        pursuant to statute; and
                            ``(ii) the data is requested for use--
                                    ``(I) consistent with Federal law 
                                and obligations; and
                                    ``(II) to satisfy a particular 
                                purpose or carry out a specific 
                                function consistent with the purpose 
                                for which the data was collected.
                    ``(B) Entities.--The entities listed in this 
                subparagraph are--
                            ``(i) the Indian Health Service;
                            ``(ii) Indian Tribes and Tribal 
                        organizations; and
                            ``(iii) 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 such Tribal epidemiology centers 
        serving Indian Tribes regionally and any Tribal epidemiology 
        center serving Urban Indian organizations nationally.
            ``(2) The term `Indian Tribe' has the meaning given to the 
        term `Indian tribe' in section 4 of the Indian Self-
        Determination and Education Assistance Act.
            ``(3) The term `Tribal organization' has the meaning given 
        to the term `tribal organization' in section 4 of the of the 
        Indian Self-Determination and Education Assistance Act.
            ``(4) The term `Urban Indian organization' has the meaning 
        given to that term in section 4 of the Indian Health Care 
        Improvement 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,'' before 
        ``the Departments of Commerce'';
            (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, Asian Americans, 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) consult 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, in coordination with epidemiology 
        centers, to develop guidelines 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 
        guidelines 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 address misclassification and 
        undersampling of American Indians and Alaska Natives with 
        respect to--
                    ``(I) birth and death records; and
                    ``(II) health care and public health surveillance 
                systems, including, but not limited to, data 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) encourage States to enter into data sharing 
        agreements with Indian Tribes, Tribal organizations, and 
        epidemiology centers to improve the quality and accuracy of 
        public health data; and
            ``(v) not later than 180 days after the date of enactment 
        of the Tribal Health Data Improvement Act of 2021, and 
        biennially thereafter, issue a report on the following:
                    ``(I) Which States have data sharing agreements 
                with Indian Tribes, Tribal organizations, Urban Indian 
                organizations, and Tribal epidemiology centers to 
                improve the quality and accuracy of health data.
                    ``(II) What the Centers for Disease Control and 
                Prevention is doing to encourage States to enter into 
                data sharing agreements with Indian Tribes, Tribal 
                organizations, Urban Indian organizations, and Tribal 
                epidemiology centers to improve the quality and 
                accuracy of health data.
                    ``(III) Best practices and guidance for States, 
                Indian Tribes, Tribal organizations, Urban Indian 
                organizations, and Tribal epidemiology centers that 
                wish to enter into data sharing agreements.
                    ``(IV) Best practices and guidance for local, 
                State, Tribal, and Federal uniform standards for the 
                collection of data on race and ethnicity.''.
    (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 such Tribal epidemiology centers 
        serving Indian Tribes regionally and any Tribal epidemiology 
        center serving Urban Indian organizations nationally.
            ``(2) The term `Indian Tribe' has the meaning given to the 
        term `Indian tribe' in section 4 of the Indian Self-
        Determination and Education Assistance Act.
            ``(3) The term `Tribal organization' has the meaning given 
        to the term `tribal organization' in section 4 of the Indian 
        Self-Determination and Education Assistance Act.
            ``(4) 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)(1) To carry out this section, there is authorized to be 
appropriated $185,000,000 for each of the fiscal years 2022 through 
2026.
    ``(2) Of the amount authorized to be appropriated to carry out this 
section for a fiscal year, the Secretary shall not use more than 10 
percent for the combined costs of--
            ``(A) administration of this section; and
            ``(B) carrying out subsection (m)(2).''.
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