[House Report 116-546]
[From the U.S. Government Publishing Office]


116th Congress    }                                   {         Report
                        HOUSE OF REPRESENTATIVES
 2d Session       }                                   {        116-546

======================================================================



 
               TRIBAL HEALTH DATA IMPROVEMENT ACT OF 2020

                                _______
                                

 September 29, 2020.--Committed to the Committee of the Whole House on 
            the State of the Union and ordered to be printed

                                _______
                                

 Mr. Pallone, from the Committee on Energy and Commerce, submitted the 
                               following

                              R E P O R T

                        [To accompany H.R. 7948]

    The Committee on Energy and Commerce, to whom was referred 
the bill (H.R. 7948) 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, having 
considered the same, reports favorably thereon with an 
amendment and recommends that the bill as amended do pass.

                                CONTENTS

                                                                   Page
   I. Purpose and Summary.............................................4
  II. Background and Need for the Legislation.........................4
 III. Committee Hearings..............................................6
  IV. Committee Consideration.........................................6
   V. Committee Votes.................................................7
  VI. Oversight Findings..............................................7
 VII. New Budget Authority, Entitlement Authority, and Tax Expenditure7
VIII. Federal Mandates Statement......................................7
  IX. Statement of General Performance Goals and Objectives...........7
   X. Duplication of Federal Programs.................................7
  XI. Committee Cost Estimate.........................................8
 XII. Earmarks, Limited Tax Benefits, and Limited Tariff Benefits.....8
XIII. Advisory Committee Statement....................................8
 XIV. Applicability to Legislative Branch.............................8
  XV. Section-by-Section Analysis of the Legislation..................8
 XVI. Changes in Existing Law Made by the Bill, as Reported...........9

    The amendment is as follows:
  Strike all after the enacting clause and insert the 
following:

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 
                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 2020, 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 an 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 2020, 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 2021 through 
2025.
  ``(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).''.

                         I. Purpose and Summary

    H.R. 7948, the ``Tribal Health Data Improvement Act of 
2020'', was introduced on August 7, 2020, by Representatives 
Greg Gianforte (R-MT), Ben Ray Lujan (D-NM), Cathy McMorris 
Rodgers (R-WA), Markwayne Mullin (R-OK), Tom O'Halleran (D-AZ), 
and Raul Ruiz (D-CA).
    H.R. 7948 addresses longstanding disparities in the 
collection and availability of public health data with respect 
to Indian Tribes by amending the Public Health Service Act to 
strengthen the ability of the Centers for Disease Control and 
Prevention (CDC) to address and improve public health data 
sharing to Indian Tribes, Tribal organizations, and Tribal 
epidemiology centers (TECs). The legislation also requires the 
Secretary of Health and Human Services (the Secretary) to 
report on existing data sharing agreements between States, the 
CDC, and Tribal communities and identify best practices. The 
legislation also reauthorizes CDC's National Center for Health 
Statistics.

                II. Background and Need for Legislation

    The health of American Indian and Alaskan Native (AI/AN) 
populations lag behind all other races in the United 
States.\1\\2\ Economic adversity and poor social conditions 
have contributed to disproportionate disease burden, lower life 
expectancies, and other health inequalities in Tribal 
communities.\3\ Tragically, Tribal members are expected to live 
5.5 fewer years than other U.S. races.\4\ The coronavirus 
disease of 2019 (COVID-19) pandemic has further highlighted 
these longstanding health inequalities. According to CDC data, 
more than one-third of nonelderly American Indians and Alaska 
Natives are at high-risk of developing a serious illness 
resulting from a COVID-19 infection compared with one-fifth of 
White nonelderly adults.\5\\6\
---------------------------------------------------------------------------
    \1\https://www.cdc.gov/nchs/fastats/american-indian-health.htm.
    \2\Indian Health Service, Indian Health Disparities (Oct. 2019) 
(www.ihs.gov/sites/newsroom/themes/responsive2017/display_objects/
documents/factsheets/Disparities.pdf).
    \3\Indian Health Service, Indian Health Disparities (Oct. 2019) 
(www.ihs.gov/sites/newsroom/themes/responsive2017/display_objects/
documents/factsheets/Disparities.pdf).
    \4\Id.
    \5\https://www.cdc.gov/coronavirus/2019-ncov/community/tribal/
index.html.
    \6\Samantha Artiga & Kendal Orgera, COVID-19 Presents Significant 
Risks for American Indian and Alaska Native People, Kaiser Family 
Foundation (May 14, 2020), https://www.kff.org/coronavirus-covid-19/
issue-brief/covid-19-presents-significant-risks-for-american-indian-
and-alaska-native-people/.
---------------------------------------------------------------------------
    Established in 1992 pursuant to the Indian Health Care 
Improvement Act (IHCIA),\7\ TECs are responsible for managing 
public health information systems serving American Indian and 
Alaska Native communities.\8\ In 2010, Congress permanently 
reauthorized IHCIA\9\ including a provision designating TECs as 
public health authorities under the Health Insurance 
Portability and Accountability Act (HIPAA) and authorizing 
these entities access to data held by the U.S. Department of 
Health and Human Services (HHS).\10\ In addition, IHCIA 
specified that the HHS Secretary must grant TECs access to 
``data, data sets, monitoring systems, delivery systems, and 
other protected health information in the possession of the 
Secretary.''\11\
---------------------------------------------------------------------------
    \7\Pub. L. No. 102-573, 106 Stat. 4526 Sec.  214(a)(1).
    \8\Tribal Epidemiology Centers, About. (https://
tribalepicenters.org/about/).
    \9\The Patient Protection and Affordable Care Act, Pub. L. No. 111-
148 (2010).
    \10\25 U.S.C.A Sec.  1621m(e)(1).
    \11\25 U.S.C. Sec.  1621m(e)(2).
---------------------------------------------------------------------------
    Currently, 12 TECs manage regional public health 
information systems, disease prevention and control programs, 
and coordinate with other public health authorities in the 
collection and study of epidemiological data.\12\ TECs perform 
vital public health surveillance work and assistance in 
consultation with and on the request of the Indian Tribes, 
tribal organizations, and Urban Indian Health Programs.\13\ 
This includes monitoring the spread of COVID-19 and studying 
the underlying health risks that could put American Indians and 
Alaska Natives at higher risk for the disease. In May 2020, the 
COVID-19 pandemic drew attention to longstanding deficiencies 
in the ability for TECs ability to access essential public 
health data from the CDC and other entities.\14\ Without access 
to the critical data information that the CDC collects, TECs 
cannot effectively do the work needed to manage epidemiological 
outbreaks across Indian country, such as COVID-19, or other 
diseases.\15\
---------------------------------------------------------------------------
    \12\ Tribal Epidemiology Centers, About. (https://
tribalepicenters.org/about/).
    \13\https://www.cdc.gov/tribal/documents/tec_overview.pdf.
    \14\Darius Tahir & Adam Cancryn, American Indian Tribes Thwarted in 
Efforts to Get Coronavirus Data, Politico (Jun. 11, 2020), 
www.politico.com/news/2020/06/11/native-american-coronavirus-data-
314527.
    \15\https://www.cdc.gov/healthytribes/pdf/CDC-indian-country-
508.pdf.
---------------------------------------------------------------------------
    According to the CDC Office for State, Tribal, Local and 
Territorial Support, ``[a]ccess to AI/AN public health data is 
a continuing issue facing TECs, yet is essential towards the 
successful performance of these functions.''\16\ CDC continues 
by clearly stating that, ``[a]n additional issue affecting TECs 
is their difficulty securing relevant data,\17\ fostered by 
concern from State and local jurisdictions and private entities 
about release of identifiable health data, as well as by State 
laws limiting access to certain health data.''\18\\19\
---------------------------------------------------------------------------
    \16\ Centers for Disease Control and Prevention, Tribal 
Epidemiology Centers Designated as Public Health Authorities Under the 
Health Insurance Portability and Accountability Act. (Accessed Sept. 
17, 2020) http://www.cdc.gov/phlp/docs/tec-issuebrief.pdf.
    \17\James G. Hodge, Jr., Torrey Kaufman, and Craig Jacques, Legal 
Issues Concerning Identifiable Health Data Sharing Between State/Local 
Public Health Authorities and Tribal Epidemiology Centers in Selected 
US Jurisdictions, COUNCIL OF STATE AND TERRITORIAL EPIDEMIOLOGISTS, 1 
(Nov. 8, 2011), http://c.ymcdn.com/sites/www.cste.org/resource/resmgr/
PDFs/LegalIssuesTribalJuris.pdf.
    \18\Id.
    \19\Centers for Disease Control and Prevention, Tribal Epidemiology 
Centers Designated as Public Health Authorities Under the Health 
Insurance Portability and Accountability Act. (Accessed Sept. 17, 2020) 
http://www.cdc.gov/phlp/docs/tec-issuebrief.pdf.
---------------------------------------------------------------------------
    H.R. 7948 ensures that Tribal Nations are equipped with the 
necessary public health data to operate public health programs 
and improve health outcomes within their communities by 
clarifying the Secretary of HHS's role in collection and 
availability of health data with respect to Indian Tribes. It 
also mandates ways of improving health statistics reporting 
with respect to Indian Tribes such as requiring the Secretary 
to release all applicable public health data to TECs within 180 
days of enactment and requiring the CDC to expand and improve 
their assistance to States with respect to sharing data with 
Tribal entities. Finally, H.R. 7948 reauthorizes the National 
Center for Health Statistics with additional monies in order to 
provide funding for the new programs and authorities 
established in this legislation.

                        III. Committee Hearings

    For the purposes of section 103(i) of H. Res. 6 of the 
116th Congress, the following hearing was used to develop or 
consider H.R. 7948:
    The full Committee on Energy and Commerce held a hearing on 
July 8, 2020, entitled ``Addressing the Urgent Needs of Our 
Tribal Communities.'' The full committee received testimony 
from the following witnesses:
           Charles Grim, D.D.S., M.H.S.A., Secretary, 
        Chickasaw Nation Department of Health
           Jonathan Nez, President, Navajo Nation
           The Honorable Christine Sage, Chairman, 
        Southern Ute Indian Tribe
           Fawn Sharp, President, National Congress of 
        American Indians
           Pilar M. Thomas, Partner, Quarles & Brady 
        LLP

                      IV. Committee Consideration

    H.R. 7948, the ``Tribal Health Data Improvement Act of 
2020'', was introduced on August 7, 2020, by Representatives 
Gianforte (R-MT), Lujan (D-NM), Rodgers (R-WA), Mullin (R-OK), 
O'Halleran (D-AZ), and Ruiz (D-CA), and was referred to the 
Committee on Energy and Commerce. The bill was then referred to 
the Subcommittee on Health on August 10, 2020. The hearing on 
legislative issue was held by the full Committee prior to the 
introduction of H.R. 7948.
    On September 9, 2020, H.R. 7948 was discharged from further 
consideration by the Subcommittee on Health as the bill was 
called up for markup by the full Committee on Energy and 
Commerce. The full Committee met in virtual open markup 
session, pursuant to notice, on September 9, 2020, to consider 
H.R. 7948. An amendment in the nature of a substitute (AINS) 
was offered by Mr. Mullin. The Mullin AINS was agreed to by a 
voice vote. At the conclusion of consideration, Mr. Pallone, 
Chairman of the committee, offered a motion to order H.R. 7948 
reported favorably to the House, amended, which was agreed to 
by a voice vote, a quorum being present.

                           V. Committee Votes

    Clause 3(b) of rule XIII of the Rules of the House of 
Representatives requires the Committee to list each record vote 
on the motion to report legislation and amendments thereto. The 
Committee advises that there was no record vote taken on H.R. 
7948, including the motion on final passage of the bill.

                         VI. Oversight Findings

    Pursuant to clause 3(c)(1) of rule XIII and clause 2(b)(1) 
of rule X of the Rules of the House of Representatives, the 
oversight findings and recommendations of the Committee are 
reflected in the descriptive portion of the report.

 VII. New Budget Authority, Entitlement Authority, and Tax Expenditures

    Pursuant to 3(c)(2) of rule XIII of the Rules of the House 
of Representatives, the Committee adopts as its own the 
estimate of new budget authority, entitlement authority, or tax 
expenditures or revenues contained in the cost estimate 
prepared by the Director of the Congressional Budget Office 
pursuant to section 402 of the Congressional Budget Act of 
1974.
    The Committee has requested but not received from the 
Director of the Congressional Budget Office a statement as to 
whether this bill contains any new budget authority, spending 
authority, credit authority, or an increase or decrease in 
revenues or tax expenditures.

                    VIII. Federal Mandates Statement

    The Committee adopts as its own the estimate of Federal 
mandates prepared by the Director of the Congressional Budget 
Office pursuant to section 423 of the Unfunded Mandates Reform 
Act.

       IX. Statement of General Performance Goals and Objectives

    Pursuant to clause 3(c)(4) of rule XIII, the general 
performance goal or objective of this legislation is to enhance 
the collection and availability of public health data with 
respect to Indian Tribes.

                   X. Duplication of Federal Programs

    Pursuant to clause 3(c)(5) of rule XIII, no provision of 
H.R. 7948 is known to be duplicative of another Federal 
program, including any program that was included in a report to 
Congress pursuant to section 21 of Public Law 111-139 or the 
most recent Catalog of Federal Domestic Assistance.

                      XI. Committee Cost Estimate

    Pursuant to clause 3(d)(1) of rule XIII, the Committee 
adopts as its own the cost estimate prepared by the Director of 
the Congressional Budget Office pursuant to section 402 of the 
Congressional Budget Act of 1974.

    XII. Earmarks, Limited Tax Benefits, and Limited Tariff Benefits

    Pursuant to clause 9(e), 9(f), and 9(g) of rule XXI, the 
Committee finds that H.R. 7948 contains no earmarks, limited 
tax benefits, or limited tariff benefits.

                   XIII. Advisory Committee Statement

    No advisory committee within the meaning of section 5(b) of 
the Federal Advisory Committee Act was created by this 
legislation.

                XIV. Applicability to Legislative Branch

    The Committee finds that the legislation does not relate to 
the terms and conditions of employment or access to public 
services or accommodations within the meaning of section 
102(b)(3) of the Congressional Accountability Act.

           XV. Section-by-Section Analysis of the Legislation


Section 1. Short title

    Section 1 designates that the short title for 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

    Section 2 amends section 3101 of the Public Health Service 
Act to clarify the Secretary's responsibility to report and 
disseminate such data collected pursuant to section 3010(a) to 
the Indian Health Service, Indian Tribes, Tribal organizations, 
and TECs authorized under the IHCIA. These data include race, 
ethnicity, sex, preferred language, and disability status 
Section 2 requires the Secretary to create a data sharing 
strategy that takes into consideration recommendations by the 
Secretary's Tribal Advisory Committee to ensure that TECs and 
Indian Tribes have access to the data sources necessary to 
accomplish their public health responsibilities while 
protecting the privacy and security of such data.
    Section 2 also requires the Secretary to, within 180 days 
of enactment of this legislation, make health care and public 
health surveillance data available to the Indian Health 
Service, Indian Tribes, Tribal organizations, and TECs so long 
as the data requested for use is consistent with Federal law 
and obligations.

Sec. 3. Improving health statistics reporting with respect to Indian 
        Tribes

    Section 3 amends section 306 of the Public Health Service 
Act to require the Secretary to consult with Indian Tribes, 
Tribal organizations, the Tribal Health Advisory Group of the 
Centers for Medicare and Medicaid Services, and Urban Indian 
organizations, in order 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. The Secretary must enter into 
cooperative agreements with Indian Tribes, Tribal 
organizations, Urban Indian organizations, and TECs to address 
misclassification and undersampling of American Indians and 
Alaska Natives with respect to birth and death records and 
health care and public health surveillance systems data.
    Section 3 requires that the Secretary to issue a report--
not later than 180 days after the date of enactment of this 
legislation and biennially thereafter--regarding data sharing 
agreements between States and Indian Tribes, Tribal 
organizations, Urban Indian organizations, and TECs. The report 
must outline what the CDC is doing to encourage States to work 
with Tribal communities and must identify best practices and 
guidance for Tribes, Tribal organizations, Urban Indian 
organizations, and TECs that wish to enter into data sharing 
agreements. The report must also include best practices and 
guidance for local, State, Tribal, and Federal uniform 
standards for the collection of data on race and ethnicity.
    Section 3 also increases the amount authorized to be 
appropriated for the National Center for Health Statistics to 
$185,000,000 for each of the fiscal years 2021 through 2025.

       XVI. Changes in Existing Law Made by the Bill, as Reported

  In compliance with clause 3(e) of rule XIII of the Rules of 
the House of Representatives, changes in existing law made by 
the bill, as reported, are shown as follows (existing law 
proposed to be omitted is enclosed in black brackets, new 
matter is printed in italics, and existing law in which no 
change is proposed is shown in roman):

                       PUBLIC HEALTH SERVICE ACT




           *       *       *       *       *       *       *
     TITLE III--GENERAL POWERS AND DUTIES OF PUBLIC HEALTH SERVICE


Part A--Research and Investigation

           *       *       *       *       *       *       *



                 national center for health statistics

  Sec. 306. (a) There is established in the Department of 
Health and Human Services the National Center for Health 
Statistics (hereinafter in this section referred to as the 
``Center'') which shall be under the direction of a Director 
who shall be appointed by the Secretary. The Secretary, acting 
through the Center, shall conduct and support statistical and 
epidemiological activities for the purpose of improving the 
effectiveness, efficiency, and quality of health services in 
the United States.
  (b) In carrying out subsection (a), the Secretary, acting 
through the Center--
          (1) shall collect statistics on--
                  (A) the extent and nature of illness and 
                disability of the population of the United 
                States (or of any groupings of the people 
                included in the population), including life 
                expectancy, the incidence of various acute and 
                chronic illnesses, and infant and maternal 
                morbidity and mortality,
                  (B) the impact of illness and disability of 
                the population on the economy of the United 
                States and on other aspects of the well-being 
                of its population (or of such groupings),
                  (C) environmental, social, and other health 
                hazards,
                  (D) determinants of health,
                  (E) health resources, including physicians, 
                dentists, nurses, and other health 
                professionals by specialty and type of practice 
                and the supply of services by hospitals, 
                extended care facilities, home health agencies, 
                and other health institutions,
                  (F) utilization of health care, including 
                utilization of (i) ambulatory health services 
                by specialties and types of practice of the 
                health professionals providing such services, 
                and (ii) services of hospitals, extended care 
                facilities, home health agencies, and other 
                institutions,
                  (G) health care costs and financing, 
                including the trends in health care prices and 
                cost, the sources of payments for health care 
                services, and Federal, State, and local 
                governmental expenditures for health care 
                services, and
                  (H) family formation, growth, and 
                dissolution;
          (2) shall undertake and support (by grant or 
        contract) research, demonstrations, and evaluations 
        respecting new or improved methods for obtaining 
        current data on the matters referred to in paragraph 
        (1);
          (3) may undertake and support (by grant or contract) 
        epidemiological research, demonstrations, and 
        evaluations on the matters referred to in paragraph 
        (1); and
          (4) may collect, furnish, tabulate, and analyze 
        statistics, and prepare studies, on matters referred to 
        in paragraph (1) upon request of public and nonprofit 
        private entities under arrangements under which the 
        entities will pay the cost of the service provided.
Amounts appropriated to the Secretary from payments made under 
arrangements made under paragraph (4) shall be available to the 
Secretary for obligation until expended.
  (c) The Center shall furnish such special statistical and 
epidemiological compilations and surveys as the Committee on 
Labor and Human Resources and the Committee on Appropriations 
of the Senate and the Committee on Energy and Commerce and the 
Committee on Appropriations of the House of Representatives may 
request. Such statistical and epidemiological compilations and 
surveys shall not be made subject to the payment of the actual 
or estimated cost of the preparation of such compilations and 
surveys.
  (d) To insure comparability and reliability of health 
statistics, the Secretary shall, through the Center, provide 
adequate technical assistance to assist State and local 
jurisdictions, Indian Tribes, Tribal organizations, and 
epidemiology centers in the development of model laws dealing 
with issues of confidentiality and comparability of data.
  (e) For the purpose of producing comparable and uniform 
health information and statistics, there is established the 
Cooperative Health Statistics System. The Secretary, acting 
through the Center, shall--
          (1) coordinate the activities of Federal agencies 
        involved in the design and implementation of the 
        System;
          (2) undertake and support (by grant or contract) 
        research, development, demonstrations, and evaluations 
        respecting the System;
          (3) make grants to and enter into contracts with 
        State and local health agencies, Indian Tribes, Tribal 
        organizations, and epidemiology centers to assist them 
        in meeting the costs of data collection and other 
        activities carried out under the System; and
          (4) review the statistical activities of the 
        Department of Health and Human Services to assure that 
        they are consistent with the System.
States participating in the System shall designate a State 
agency to administer or be responsible for the administration 
of the statistical activities within the State under the 
System. The Secretary, acting through the Center, shall 
prescribe guidelines to assure that statistical activities 
within States participating in the system produce uniform and 
timely data and assure appropriate access to such data.
  (f) To assist in carrying out this section, the Secretary, 
acting through the Center, shall cooperate and consult with the 
Indian Health Service, the Departments of Commerce and Labor, 
and any other interested Federal departments or agencies and 
with State and local health departments and agencies, Indian 
Tribes, Tribal organizations, and epidemiology centers. For 
such purpose [he shall] the Secretary shall utilize insofar as 
possible the services or facilities of any agency of the 
Federal Government and, without regard to section 3709 of the 
Revised Statutes (41 U.S.C. 5), of any appropriate State or 
other public agency, and may, without regard to such section, 
utilize the services or facilities of any private agency, 
organization, group, or individual, in accordance with written 
agreements between the head of such agency, organization, or 
group and the Secretary or between such individual and the 
Secretary. Payment, if any, for such services or facilities 
shall be made in such amounts as may be provided in such 
agreement.
  (g) To secure uniformity in the registration and collection 
of mortality, morbidity, and other health data, the Secretary 
shall prepare and distribute suitable and necessary forms for 
the collection and compilation of such data.
  (h)(1) There shall be an annual collection of data from the 
records of births, deaths, marriages, and divorces in 
registration areas. The data shall be obtained only from and 
restricted to such records of the States and municipalities 
which the Secretary, [in his discretion] in the discretion of 
the Secretary, determines possess records affording 
satisfactory data in necessary detail and form. The Secretary 
shall encourage States and registration areas to obtain 
detailed data on ethnic and racial populations, including 
subpopulations of [Hispanics, Asian Americans, and Pacific 
Islanders] American Indians and Alaska Natives, Hispanics, 
Asian Americans, and Native Hawaiian and other Pacific 
Islanders with significant representation in the State or 
registration area. Each State or registration area shall be 
paid by the Secretary the Federal share of its reasonable costs 
(as determined by the Secretary) for collecting and 
transcribing (at the request of the Secretary and by whatever 
method authorized by him) its records for such data.
  (2) There shall be an annual collection of data from a 
statistically valid sample concerning the general health, 
illness, and disability status of the civilian 
noninstitutionalized population. Specific topics to be 
addressed under this paragraph, on an annual or periodic basis, 
shall include the incidence of illness and accidental injuries, 
prevalence of chronic diseases and impairments, disability, 
physician visits, hospitalizations, and the relationship 
between demographic and socioeconomic characteristics and 
health characteristics.
  (i) The Center may provide to public and nonprofit private 
entities technical assistance in the effective use in such 
activities of statistics collected or compiled by the Center.
  (j) In carrying out the requirements of section 304(c) and 
paragraph (1) of subsection (e) of this section, the Secretary 
shall coordinate health statistical and epidemiological 
activities of the Department of Health and Human Services by--
          (1) establishing standardized means for the 
        collection of health information and statistics under 
        laws administered by the Secretary;
          (2) developing, in consultation with the National 
        Committee on Vital and Health Statistics, and 
        maintaining the minimum sets of data needed on a 
        continuing basis to fulfill the collection requirements 
        of subsection (b)(1);
          (3) after consultation with the National Committee on 
        Vital and Health Statistics, establishing standards to 
        assure the quality of health statistical and 
        epidemiological data collection, processing, and 
        analysis;
          (4) in the case of proposed health data collections 
        of the Department which are required to be reviewed by 
        the Director of the Office of Management and Budget 
        under section 3509 of title 44, United States Code, 
        reviewing such proposed collections to determine 
        whether they conform with the minimum sets of data and 
        the standards promulgated pursuant to paragraphs (2) 
        and (3), and if any such proposed collection is found 
        not to be in conformance, by taking such action as may 
        be necessary to assure that it will conform to such 
        sets of data and standards, and
          (5) periodically reviewing ongoing health data 
        collections of the Department, subject to review under 
        such section 3509, to determine if the collections are 
        being conducted in accordance with the minimum sets of 
        data and the standards promulgated pursuant to 
        paragraphs (2) and (3) and, if any such collection is 
        found not to be in conformance, by taking such action 
        as may be necessary to assure that the collection will 
        conform to such sets of data and standards not later 
        than the nineteenth day after the date of the 
        completion of the review of the collection.
  (k)(1) There is established in the Office of the Secretary a 
committee to be known as the National Committee on Vital and 
Health Statistics (hereinafter in this subsection, referred to 
as the ``Committee'') which shall consist of 18 members.
  (2) The members of the Committee shall be appointed from 
among persons who have distinguished themselves in the fields 
of health statistics, electronic interchange of health care 
information, privacy and security of electronic information, 
population-based public health, purchasing or financing health 
care services, integrated computerized health information 
systems, health services research, consumer interests in health 
information, health data standards, epidemiology, and the 
provision of health services. Members of the Committee shall be 
appointed for terms of 4 years.
  (3) Of the members of the Committee--
          (A) 1 shall be appointed[, not later than 60 days 
        after the date of the enactment of the Health Insurance 
        Portability and Accountability Act of 1996,] by the 
        Speaker of the House of Representatives after 
        consultation with the Minority Leader of the House of 
        Representatives;
          (B) 1 shall be appointed[, not later than 60 days 
        after the date of the enactment of the Health Insurance 
        Portability and Accountability Act of 1996,] by the 
        President pro tempore of the Senate after consultation 
        with the Minority Leader of the Senate; and
          (C) 16 shall be appointed by the Secretary.
  (4) Members of the Committee shall be compensated in 
accordance with section 208(c).
  (5) The Committee--
          (A) shall assist and advise the Secretary--
                  (i) to delineate statistical problems bearing 
                on health and health services which are of 
                national or international interest;
                  (ii) to stimulate studies of such problems by 
                other organizations and agencies whenever 
                possible or to make investigations of such 
                problems through subcommittees;
                  (iii) to determine, approve, and revise the 
                terms, definitions, classifications, and 
                guidelines for assessing health status and 
                health services, their distribution and costs, 
                for use (I) within the Department of Health and 
                Human Services, (II) by all programs 
                administered or funded by the Secretary, 
                including the Federal-State-local cooperative 
                health statistics system referred to in 
                subsection (e), and (III) to the extent 
                possible as determined by the head of the 
                agency involved, by the Department of Veterans 
                Affairs, the Department of Defense, and other 
                Federal agencies concerned with health and 
                health services;
                  (iv) with respect to the design of and 
                approval of health statistical and health 
                information systems concerned with the 
                collection, processing, and tabulation of 
                health statistics within the Department of 
                Health and Human Services, with respect to the 
                Cooperative Health Statistics System 
                established under subsection (e), and with 
                respect to the standardized means for the 
                collection of health information and statistics 
                to be established by the Secretary under 
                subsection (j)(1);
                  (v) to review and comment on findings and 
                proposals developed by other organizations and 
                agencies and to make recommendations for their 
                adoption or implementation by local, State, 
                national, or international agencies;
                  (vi) to cooperate with national committees of 
                other countries and with the World Health 
                Organization and other national agencies in the 
                studies of problems of mutual interest;
                  (vii) to issue an annual report on the state 
                of the Nation's health, its health services, 
                their costs and distributions, and to make 
                proposals for improvement of the Nation's 
                health statistics and health information 
                systems; and
                  (viii) in complying with the requirements 
                imposed on the Secretary under part C of title 
                XI of the Social Security Act;
          (B) shall study the issues related to the adoption of 
        uniform data standards for patient medical record 
        information and the electronic exchange of such 
        information;
          (C) shall report to the Secretary not later than 4 
        years after the date of the enactment of the Health 
        Insurance Portability and Accountability Act of 1996 
        recommendations and legislative proposals for such 
        standards and electronic exchange; and
          (D) shall be responsible generally for advising the 
        Secretary and the Congress on the status of the 
        implementation of part C of title XI of the Social 
        Security Act.
  (6) In carrying out health statistical activities under this 
part, the Secretary shall consult with, and seek the advice of, 
the Committee and other appropriate professional advisory 
groups.
  (7) [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] The 
Committee shall, on an biennial basis, submit to the Congress, 
and make public, a report regarding the implementation of part 
C of title XI of the Social Security Act. Such report shall 
address the following subjects, to the extent that the 
Committee determines appropriate:
          (A) The extent to which persons required to comply 
        with part C of title XI of the Social Security Act are 
        cooperating in implementing the standards adopted under 
        such part.
          (B) The extent to which such entities are meeting the 
        security standards adopted under such part and the 
        types of penalties assessed for noncompliance with such 
        standards.
          (C) Whether the Federal and State Governments are 
        receiving information of sufficient quality to meet 
        their responsibilities under such part.
          (D) Any problems that exist with respect to 
        implementation of such part.
          (E) The extent to which timetables under such part 
        are being met.
  (l) In carrying out this section, the Secretary, acting 
through the Center, shall collect and analyze adequate health 
data that is specific to particular ethnic and racial 
populations, including data collected under national health 
surveys. Activities carried out under this subsection shall be 
in addition to any activities carried out under subsection (m).
  (m)(1) The Secretary, acting through the Center, may make 
grants to public and nonprofit private entities for--
          (A) the conduct of special surveys or studies on the 
        health of ethnic and racial populations or 
        subpopulations;
          (B) analysis of data on ethnic and racial populations 
        and subpopulations; and
          (C) research on improving methods for developing 
        statistics on ethnic and racial populations and 
        subpopulations.
  (2) The Secretary, acting through the Center, may provide 
technical assistance, standards, and methodologies to grantees 
supported by this subsection in order to maximize the data 
quality and comparability with other studies.
  (3) Provisions of section 308(d) do not apply to surveys or 
studies conducted by grantees under this subsection unless the 
Secretary, in accordance with regulations the Secretary may 
issue, determines that such provisions are necessary for the 
conduct of the survey or study and receives adequate assurance 
that the grantee will enforce such provisions.
  (4)(A) [Subject to subparagraph (B), the] The Secretary, 
acting through the Center, shall collect data on Hispanics [and 
major Hispanic subpopulation groups and American Indians], 
major Hispanic subgroups, and American Indians and Alaska 
Natives, and for developing special area population studies on 
major Asian American and Pacific Islander populations.
  [(B) The provisions of subparagraph (A) shall be effective 
with respect to a fiscal year only to the extent that funds are 
appropriated pursuant to paragraph (3) of subsection (n), and 
only if the amounts appropriated for such fiscal year pursuant 
to each of paragraphs (1) and (2) of subsection (n) equal or 
exceed the amounts so appropriated for fiscal year 1997.]
  (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 
        2020, 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.
  (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.
  [(n)(1) For health statistical and epidemiological activities 
undertaken or supported under subsections (a) through (l), 
there are authorized to be appropriated such sums as may be 
necessary for each of the fiscal years 1991 through 2003.
  [(2) For activities authorized in paragraphs (1) through (3) 
of subsection (m), there are authorized to be appropriated such 
sums as may be necessary for each of the fiscal years 1999 
through 2003. Of such amounts, the Secretary shall use not more 
than 10 percent for administration and for activities described 
in subsection (m)(2).
  [(3) For activities authorized in subsection (m)(4), there 
are authorized to be appropriated $1,000,000 for fiscal year 
1998, and such sums as may be necessary for each of the fiscal 
years 1999 through 2002.]
  (o)(1) To carry out this section, there is authorized to be 
appropriated $185,000,000 for each of the fiscal years 2021 
through 2025.
  (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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           TITLE XXXI--DATA COLLECTION, ANALYSIS, AND QUALITY

SEC. 3101. DATA COLLECTION, ANALYSIS, AND QUALITY.

  (a) Data Collection.--
          (1) In general.--The Secretary shall ensure that[, by 
        not later than 2 years after the date of enactment of 
        this title,] any federally conducted or supported 
        health care or public health program, activity or 
        survey (including Current Population Surveys and 
        American Community Surveys conducted by the Bureau of 
        Labor Statistics and the Bureau of the Census) collects 
        and reports, to the extent practicable--
                  (A) data on race, ethnicity, sex, primary 
                language, and disability status for applicants, 
                recipients, or participants;
                  (B) data at the smallest geographic level 
                such as State, Tribal, local, or institutional 
                levels if such data can be aggregated;
                  (C) sufficient data to generate statistically 
                reliable estimates by racial, ethnic, sex, 
                primary language, and disability status 
                subgroups for applicants, recipients or 
                participants using, if needed, statistical 
                oversamples of these subpopulations; and
                  (D) any other demographic data as deemed 
                appropriate by the Secretary regarding health 
                disparities.
          (2) Collection standards.--In collecting data 
        described in paragraph (1), the Secretary or designee 
        shall--
                  (A) use Office of Management and Budget 
                standards, at a minimum, for race and ethnicity 
                measures;
                  (B) develop standards for the measurement of 
                sex, primary language, and disability status;
                  (C) develop standards for the collection of 
                data described in paragraph (1) that, at a 
                minimum--
                          (i) collects self-reported data by 
                        the applicant, recipient, or 
                        participant; and
                          (ii) collects data from a parent or 
                        legal guardian if the applicant, 
                        recipient, or participant is a minor or 
                        legally incapacitated;
                  (D) survey health care providers and 
                establish other procedures in order to assess 
                access to care and treatment for individuals 
                with disabilities and to identify--
                          (i) locations where individuals with 
                        disabilities access primary, acute 
                        (including intensive), and long-term 
                        care;
                          (ii) the number of providers with 
                        accessible facilities and equipment to 
                        meet the needs of the individuals with 
                        disabilities, including medical 
                        diagnostic equipment that meets the 
                        minimum technical criteria set forth in 
                        section 510 of the Rehabilitation Act 
                        of 1973; and
                          (iii) the number of employees of 
                        health care providers trained in 
                        disability awareness and patient care 
                        of individuals with disabilities; and
                  (E) require that any reporting requirement 
                imposed for purposes of measuring quality under 
                any ongoing or federally conducted or supported 
                health care or public health program, activity, 
                or survey includes requirements for the 
                collection of data on individuals receiving 
                health care items or services under such 
                programs activities by race, ethnicity, sex, 
                primary language, and disability status.
          (3) Data management.--In collecting data described in 
        paragraph (1), the Secretary, acting through the 
        National Coordinator for Health Information Technology 
        shall--
                  (A) develop national standards for the 
                management of data collected; and
                  (B) develop interoperability and security 
                systems for data management.
  (b)  [Data Analysis.-- 
          [(1) In general.--For each federally] Data Analysis._
        For each federally  conducted or supported health care 
        or public health program or activity, the Secretary 
        shall analyze data collected under paragraph (a) to 
        detect and monitor trends in health disparities (as 
        defined for purposes of section 485E) at the Federal 
        and State levels.
  (c) Data Reporting and Dissemination.--
          (1) In general.--The Secretary shall make the 
        analyses described in (b) available to--
                  (A) the Office of Minority Health;
                  (B) the National Center on Minority Health 
                and Health Disparities;
                  (C) the Agency for Healthcare Research and 
                Quality;
                  (D) the Centers for Disease Control and 
                Prevention;
                  (E) the Centers for Medicare & Medicaid 
                Services;
                  [(F) the Indian Health Service and 
                epidemiology centers funded under the Indian 
                Health Care Improvement Act;]
                  (F) the Indian Health Service, Indian Tribes, 
                Tribal organizations, and epidemiology centers 
                authorized under the Indian Health Care 
                Improvement Act;
                  (G) the Office of Rural health;
                  (H) other agencies within the Department of 
                Health and Human Services; and
                  (I) other entities as determined appropriate 
                by the Secretary.
          (2) Reporting of data.--The Secretary shall report 
        data and analyses described in (a) and (b) through--
                  (A) public postings on the Internet websites 
                of the Department of Health and Human Services; 
                and
                  (B) any other reporting or dissemination 
                mechanisms determined appropriate by the 
                Secretary.
          (3) Availability of data.--The Secretary may make 
        data described in (a) and (b) available for additional 
        research, analyses, and dissemination to other Federal 
        agencies, Indian Tribes, Tribal organizations, and 
        epidemiology centers, non-governmental entities, and 
        the public, in accordance with any Federal agency's 
        data user agreements.
  (d) Limitations on Use of Data.--Nothing in this section 
shall be construed to permit the use of information collected 
under this section in a manner that would adversely affect any 
individual.
  (e) Protection and Sharing of Data.--
          (1) Privacy and other safeguards.--The Secretary 
        shall ensure (through the promulgation of regulations 
        or otherwise) that--
                  (A) all data collected pursuant to subsection 
                (a) is protected--
                          (i) under privacy protections that 
                        are at least as broad as those that the 
                        Secretary applies to other health data 
                        under the regulations promulgated under 
                        section 264(c) of the Health Insurance 
                        Portability and Accountability Act of 
                        1996 (Public Law 104-191; 110 Stat. 
                        2033); and
                          (ii) from all inappropriate internal 
                        use by any entity that collects, 
                        stores, or receives the data, including 
                        use of such data in determinations of 
                        eligibility (or continued eligibility) 
                        in health plans, and from other 
                        inappropriate uses, as defined by the 
                        Secretary; and
                  (B) all appropriate information security 
                safeguards are used in the collection, 
                analysis, and sharing of data collected 
                pursuant to subsection (a).
          (2) Data sharing.--The Secretary shall establish 
        procedures for sharing data collected pursuant to 
        subsection (a), measures relating to such data, and 
        analyses of such data, with other relevant Federal and 
        State agencies including the agencies, centers, and 
        entities within the Department of Health and Human 
        Services specified in subsection (c)(1)..
          (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 2020, 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.
  (f) Data on Rural Underserved Populations.--The Secretary 
shall ensure that any data collected in accordance with this 
section regarding racial and ethnic minority groups are also 
collected regarding underserved rural and frontier populations.
  [(g) Authorization of Appropriations.--For the purpose of 
carrying out this section, there are authorized to be 
appropriated such sums as may be necessary for each of fiscal 
years 2010 through 2014.
  [(h) Requirement for Implementation.--Notwithstanding any 
other provision of this section, data may not be collected 
under this section unless funds are directly appropriated for 
such purpose in an appropriations Act.]
  (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.
  [(i)] (h) Consultation.--The Secretary shall consult with the 
Director of the Office of Personnel Management, the Secretary 
of Defense, the Secretary of Veterans Affairs, the Director of 
the Bureau of the Census, the Commissioner of Social Security, 
and the head of other appropriate Federal agencies in carrying 
out this section.

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