Title: ETHIC Act
Policy area: Health

Summary:
Ensuring Transparent Honest Information on COVID-19 Act or the ETHIC Act
This bill retroactively requires states and other jurisdictions to report specified COVID-19 (i.e., coronavirus disease 2019) data to the Centers for Disease Control and Prevention (CDC) as a condition of receiving certain COVID-19 funding. It also directs the CDC and others to take additional actions to address public health data systems, public health infrastructure, and health disparities.
Specifically, the bill directs the CDC to improve its data systems, develop relevant data and technology systems, and expand its public health infrastructure. The CDC must also award grants to government health departments to modernize their data systems, infrastructure, and collection of health disparities data.
Furthermore, the Department of Health and Human Services must commission a study from the National Academies of Sciences, Engineering, and Medicine on public health data infrastructure, and the Indian Health Service must, as advised by a panel of tribal representatives, conduct research on health inequities among tribal populations, including inequities related to COVID-19.

[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[H.R. 8205 Introduced in House (IH)]

<DOC>






116th CONGRESS
  2d Session
                                H. R. 8205

To amend the Public Health Service Act to expand, enhance, and improve 
 applicable public health data systems used by the Centers for Disease 
            Control and Prevention, and for other purposes.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           September 11, 2020

  Ms. Castor of Florida (for herself, Ms. Underwood, and Ms. Haaland) 
 introduced the following bill; which was referred to the Committee on 
   Energy and Commerce, and in addition to the Committees on Natural 
 Resources, and Oversight and Reform, for a period to be subsequently 
   determined by the Speaker, in each case for consideration of such 
 provisions as fall within the jurisdiction of the committee concerned

_______________________________________________________________________

                                 A BILL


 
To amend the Public Health Service Act to expand, enhance, and improve 
 applicable public health data systems used by the Centers for Disease 
            Control and Prevention, 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 ``Ensuring Transparent Honest 
Information on COVID-19 Act'' or the ``ETHIC Act''.

SEC. 2. REQUIRED REPORTING BY STATE, LOCAL, TRIBAL, OR TERRITORIAL 
              GOVERNMENTS REGARDING COVID-19.

    (a) In General.--As a condition on receipt of funds through a 
covered grant or cooperative agreement, a State, local, Tribal, or 
territorial government shall agree to direct the appropriate State, 
local, Tribal, or territorial governmental entity (including any public 
health department thereof) to report to the Centers for Disease Control 
and Prevention, with respect to the jurisdiction involved and COVID-
19--
            (1) on a daily basis, the information listed in subsection 
        (c); and
            (2) on a weekly basis, the information listed in subsection 
        (d).
    (b) Tribal Waiver.--
            (1) Review and disposition.--Upon the receipt of a written 
        request from a Tribal government, or consortia thereof, for a 
        waiver of the conditions specified in paragraphs (1) and (2) of 
        subsection (a), the Director of the Centers for Disease Control 
        and Prevention shall, not later than 30 days after receipt of 
        such request, approve or deny it.
            (2) Denials.--In the case of a denial of a request under 
        paragraph (1), the Director of the Centers for Disease Control 
        and Prevention shall--
                    (A) provide to the requestor a written explanation 
                of the reasons for the denial; and
                    (B) provide the requestor with an opportunity to 
                correct any deficiencies in the request.
    (c) Covered Grant or Cooperative Agreement.--For purposes of this 
section, a covered grant or cooperative agreement is any grant or 
cooperative agreement awarded under any of the following laws 
(including any amendment made thereby):
            (1) This Act.
            (2) The Coronavirus Preparedness and Response Supplemental 
        Appropriations Act, 2020 (Public Law 116-123).
            (3) The Families First Coronavirus Response Act (Public Law 
        116-127).
            (4) The CARES Act (Public Law 116-136).
            (5) The Paycheck Protection Program and Health Care 
        Enhancement Act (Public Law 116-139).
    (d) Daily Reporting.--The information to be reported daily pursuant 
to subsection (a)(1) consists of the following:
            (1) Demographic characteristics, including, in a de-
        identified, disaggregated, and stratified manner, race, 
        ethnicity, age, sex, geographic region, and other relevant 
        factors of individuals tested for or diagnosed with COVID-19, 
        to the extent such information is available.
            (2) The number of adults with a confirmed case of COVID-19 
        who are hospitalized in an intensive care bed.
            (3) The number of adults with a suspected case of COVID-19 
        who are hospitalized in an intensive care bed.
            (4) The number of adults with a confirmed case of COVID-19 
        who are hospitalized in an inpatient care bed.
            (5) The number of adults with a suspected case of COVID-19 
        who are hospitalized in an inpatient care bed.
            (6) The number of children with a confirmed case of COVID-
        19 who are hospitalized in an intensive care bed.
            (7) The number of children with a suspected case of COVID-
        19 who are hospitalized in an intensive care bed.
            (8) The number of children with a confirmed case of COVID-
        19 who are hospitalized in an inpatient care bed.
            (9) The number of children with a suspected case of COVID-
        19 who are hospitalized in an inpatient care bed.
            (10) Out of the maximum number of beds for which hospitals 
        are licensed to operate, the percentage occupied by confirmed 
        or suspected COVID-19 patients.
            (11) Total staffed hospital beds.
            (12) The numbers of diagnostic and serological tests 
        administered for COVID-19, disaggregated and stratified by--
                    (A) the type of test; and
                    (B) the testing positivity rate of each type of 
                test.
            (13) The median turnaround time for diagnostic tests 
        stratified by molecular and antigen tests.
            (14) The percentage of new cases of COVID-19 linked to at 
        least one other case, and if such new cases are part of a known 
        outbreak, identification of such outbreak.
            (15) The rate of transmission of COVID-19.
            (16) The number of confirmed and probable deaths as a 
        result of COVID-19, de-identified and stratified by race, 
        ethnicity, age, sex, geographic region, and other relevant 
        factors.
            (17) Such other information as the Director of the Centers 
        for Disease Control and Prevention deems to be relevant.
    (e) Weekly Reporting.--The information to be reported weekly 
pursuant to subsection (a)(2) consists of the following:
            (1) New infections of health care workers not confirmed to 
        have contracted COVID-19 outside of the workplace.
            (2) The median time between collection of specimens for 
        diagnostic tests for COVID-19 and isolation of cases.
            (3) The percentage of new cases of COVID-19 among 
        quarantined contacts.
            (4) Such other information as the Director of the Centers 
        for Disease Control and Prevention deems to be relevant.
    (f) Public Posting of Reported Data.--On a daily basis, the 
Director of the Centers for Disease Control and Prevention shall make 
the information reported pursuant to this section, excluding personally 
identifiable information, publicly available on the website of the 
Centers for Disease Control and Prevention.
    (g) Applicability.--The condition on funding in subsection (a) 
applies with respect to the obligation and expenditure by the Federal 
Government of funds through a covered grant or cooperative agreement on 
or after the date of enactment of this Act, including with respect to 
covered grants and cooperative agreements awarded before such date.

SEC. 3. PUBLIC HEALTH DATA SYSTEM TRANSFORMATION.

    Subtitle C of title XXVIII of the Public Health Service Act (42 
U.S.C. 300hh-31 et seq.) is amended by adding at the end the following:

``SEC. 2823. PUBLIC HEALTH DATA SYSTEM TRANSFORMATION.

    ``(a) Expanding CDC and Public Health Department Capabilities.--
            ``(1) In general.--The Secretary, acting through the 
        Director of the Centers for Disease Control and Prevention, 
        shall--
                    ``(A) conduct activities to expand, enhance, and 
                improve applicable public health data systems used by 
                the Centers for Disease Control and Prevention, related 
                to the interoperability and improvement of such systems 
                (including as it relates to preparedness for, 
                prevention and detection of, and response to public 
                health emergencies); and
                    ``(B) award grants or cooperative agreements to 
                State, local, Tribal, or territorial public health 
                departments for the expansion and modernization of 
                public health data systems, to assist public health 
                departments in--
                            ``(i) assessing current data infrastructure 
                        capabilities and gaps to improve and increase 
                        consistency in data collection, storage, and 
                        analysis and, as appropriate, to improve 
                        dissemination of public health-related 
                        information;
                            ``(ii) improving secure public health data 
                        collection, transmission, exchange, 
                        maintenance, and analysis;
                            ``(iii) improving the secure exchange of 
                        data between the Centers for Disease Control 
                        and Prevention, State, local, Tribal, and 
                        territorial public health departments, public 
                        health organizations, and health care 
                        providers, including by public health officials 
                        in multiple jurisdictions within such State, as 
                        appropriate, and by simplifying and supporting 
                        reporting by health care providers, as 
                        applicable, pursuant to State law, including 
                        through the use of health information 
                        technology;
                            ``(iv) enhancing the interoperability of 
                        public health data systems (including systems 
                        created or accessed by public health 
                        departments) with health information 
                        technology, including with health information 
                        technology certified under section 3001(c)(5);
                            ``(v) supporting and training data systems, 
                        data science, and informatics personnel;
                            ``(vi) supporting earlier disease and 
                        health condition detection, such as through 
                        near real-time data monitoring, to support 
                        rapid public health responses;
                            ``(vii) supporting activities within the 
                        applicable jurisdiction related to the 
                        expansion and modernization of electronic case 
                        reporting; and
                            ``(viii) developing and disseminating 
                        information related to the use and importance 
                        of public health data.
            ``(2) Data standards.--In carrying out paragraph (1), the 
        Secretary, acting through the Director of the Centers for 
        Disease Control and Prevention, shall, as appropriate and in 
        consultation with the National Coordinator for Health 
        Information Technology and the Director of the Indian Health 
        Service, designate data and technology standards (including 
        standards for interoperability) for public health data systems, 
        with deference given to standards published by consensus-based 
        standards development organizations with public input and 
        voluntary consensus-based standards bodies.
            ``(3) Tribal consultation.--The Director of the Centers for 
        Disease Control and Prevention, the National Coordinator for 
        Health Information Technology, and Director of the Indian 
        Health Service, shall jointly consult with Indian Tribes and 
        Tribal organizations prior to designating the data and 
        technology standards under paragraph (2).
            ``(4) Public-private partnerships.--The Secretary may 
        develop and utilize public-private partnerships for technical 
        assistance, training, and related implementation support for 
        State, local, Tribal, and territorial public health 
        departments, and the Centers for Disease Control and 
        Prevention, on the expansion and modernization of electronic 
        case reporting and public health data systems, as applicable.
    ``(b) Requirements.--
            ``(1) Health information technology standards.--The 
        Secretary may not award a grant or cooperative agreement under 
        subsection (a)(1)(B) unless the applicant uses or agrees to use 
        standards endorsed by the National Coordinator for Health 
        Information Technology pursuant to section 3001(c)(1) or 
        adopted by the Secretary under section 3004.
            ``(2) Waiver.--The Secretary may waive the requirement 
        under paragraph (1) with respect to an applicant if the 
        Secretary determines that the activities under subsection 
        (a)(1)(B) cannot otherwise be carried out within the applicable 
        jurisdiction.
            ``(3) Application.--A State, local, Tribal, or territorial 
        health department applying for a grant or cooperative agreement 
        under this section shall submit an application to the Secretary 
        at such time and in such manner as the Secretary may require. 
        Such application shall include information describing--
                    ``(A) the activities that will be supported by the 
                grant or cooperative agreement; and
                    ``(B) how the modernization of the public health 
                data systems involved will support or impact the public 
                health infrastructure of the health department, 
                including a description of remaining gaps, if any, and 
                the actions needed to address such gaps.
    ``(c) Strategy and Implementation Plan.--Not later than 180 days 
after the date of enactment of this section, the Secretary, acting 
through the Director of the Centers for Disease Control and Prevention, 
shall submit to the Committee on Health, Education, Labor, and Pensions 
of the Senate and the Committee on Energy and Commerce of the House of 
Representatives a coordinated strategy and an accompanying 
implementation plan that identifies and demonstrates the measures the 
Secretary will utilize to--
            ``(1) update and improve applicable public health data 
        systems used by the Centers for Disease Control and Prevention; 
        and
            ``(2) carry out the activities described in this section to 
        support the improvement of State, local, Tribal, and 
        territorial public health data systems.
    ``(d) Consultation.--The Secretary, acting through the Director of 
the Centers for Disease Control and Prevention, shall consult with 
State, local, Tribal, and territorial health departments, professional 
medical and public health associations, associations representing 
hospitals or other health care entities, health information technology 
experts, and other appropriate public or private entities regarding the 
implementation of the grant program under subsection (a) and the 
development of the coordinated strategy and accompanying implementation 
plan under subsection (c).
    ``(e) Technical Assistance and Training.--In carrying out this 
section, the Secretary may provide technical assistance and training 
related to--
            ``(1) the exchange of information by public health data 
        systems used by relevant health care and public health entities 
        at the local, State, Federal, Tribal, and territorial levels; 
        or
            ``(2) the development and utilization of public-private 
        partnerships for implementation support applicable to this 
        section.
    ``(f) Report to Congress.--Not later than 1 year after the date of 
enactment of this section, the Secretary shall submit a report to the 
Committee on Health, Education, Labor, and Pensions of the Senate and 
the Committee on Energy and Commerce of the House of Representatives 
that includes--
            ``(1) a description of any barriers to--
                    ``(A) public health authorities implementing 
                interoperable public health data systems and electronic 
                case reporting;
                    ``(B) the exchange of information pursuant to 
                electronic case reporting; or
                    ``(C) reporting by health care providers using such 
                public health data systems, as appropriate, and 
                pursuant to State law;
            ``(2) an assessment of the potential public health impact 
        of implementing electronic case reporting and interoperable 
        public health data systems; and
            ``(3) a description of the activities carried out pursuant 
        to this section.
    ``(g) Electronic Case Reporting.--In this section, the term 
`electronic case reporting' means the automated identification, 
generation, and bilateral exchange of reports of health events among 
electronic health record or health information technology systems and 
public health authorities.
    ``(h) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $450,000,000, to remain 
available until expended.
    ``(i) Tribal Set-Aside.--Of the amounts authorized under subsection 
(h), no less than 3 percent, but up to 5 percent of such funds, shall 
be reserved for noncompetitive grants or cooperative agreements to 
Indian Tribes and Tribal organizations (as those terms are defined 
under section 4 of the Indian Self-Determination and Education 
Assistance Act).''.

SEC. 4. CORE PUBLIC HEALTH INFRASTRUCTURE FOR STATE, LOCAL, TRIBAL, AND 
              TERRITORIAL HEALTH DEPARTMENTS.

    (a) Program.--The Secretary of Health and Human Services (in this 
section referred to as the ``Secretary''), acting through the Director 
of the Centers for Disease Control and Prevention, shall establish a 
core public health infrastructure program consisting of awarding grants 
under subsection (b).
    (b) Grants.--
            (1) Award.--For the purpose of addressing core public 
        health infrastructure needs, the Secretary--
                    (A) shall award a grant to each State health 
                department;
                    (B) shall award grants to, or enter into 
                cooperative agreements with, Indian Tribes and Tribal 
                organizations on a noncompetitive basis; and
                    (C) may award grants on a competitive basis to 
                State, local, Tribal, or territorial health 
                departments.
            (2) Allocation.--Of the total amount of funds awarded as 
        grants under this subsection for a fiscal year--
                    (A) not less than 50 percent shall be for grants to 
                State health departments under paragraph (1)(A);
                    (B) not less than 5 percent shall be for grants 
                awarded to, or cooperative agreements with, Indian 
                Tribes and Tribal organizations under paragraph (1)(B); 
                and
                    (C) not less than 30 percent shall be for grants to 
                State, local, Tribal, or territorial health departments 
                under paragraph (1)(C).
    (c) Use of Funds.--A State, local, Tribal, or territorial health 
department receiving a grant under subsection (b) shall use the grant 
funds to address core public health infrastructure needs, including 
those identified in the accreditation process under subsection (g).
    (d) Formula Grants to State Health Departments.--In making grants 
under subsection (b)(1)(A), the Secretary shall award funds to each 
State health department in accordance with--
            (1) a formula based on population size, burden of 
        preventable disease and disability, and core public health 
        infrastructure gaps, including those identified in the 
        accreditation process under subsection (g); and
            (2) application requirements established by the Secretary, 
        including a requirement that the State health department submit 
        a plan that demonstrates to the satisfaction of the Secretary 
        that the State's health department will--
                    (A) address its highest priority core public health 
                infrastructure needs; and
                    (B) as appropriate, allocate funds to local health 
                departments within the State.
    (e) Formula Grants to Indian Tribes and Tribal Organizations.--In 
making grants under subsection (b)(1)(B), the Secretary shall 
coordinate with the Director of the Indian Health Service to award 
funds to Indian Tribes and Tribal organizations according to--
            (1) a formula that ensures baseline funding on a 
        noncompetitive basis for each Indian Tribe or Tribal 
        organization, or a consortia thereof, that submits an 
        application; and
            (2) awards funds above the baseline according to population 
        size, gaps in public health infrastructure, or other criteria 
        derived through consultation with Indian Tribes and Tribal 
        organizations.
    (f) Competitive Grants to State, Local, Tribal, and Territorial 
Health Departments.--In making grants under subsection (b)(1)(C), the 
Secretary shall give priority to applicants demonstrating core public 
health infrastructure needs identified in the accreditation process 
under subsection (g).
    (g) Maintenance of Effort.--
            (1) In general.--Except as provided in paragraph (2), the 
        Secretary may award a grant to an entity under subsection (b) 
        only if the entity demonstrates to the satisfaction of the 
        Secretary that--
                    (A) funds received through the grant will be 
                expended only to supplement, and not supplant, non-
                Federal and Federal funds otherwise available to the 
                entity for the purpose of addressing core public health 
                infrastructure needs; and
                    (B) with respect to activities for which the grant 
                is awarded, the entity will maintain expenditures of 
                non-Federal amounts for such activities at a level not 
                less than the level of such expenditures maintained by 
                the entity for the fiscal year preceding the fiscal 
                year for which the entity receives the grant.
            (2) Exception.--The requirement under paragraph (1) shall 
        not apply with respect to a grant awarded under subsection 
        (b)(1)(B).
    (h) Establishment of a Public Health Accreditation Program.--
            (1) In general.--The Secretary shall--
                    (A) develop, and periodically review and update, 
                standards for voluntary accreditation of State, local, 
                Tribal, and territorial health departments and public 
                health laboratories for the purpose of advancing the 
                quality and performance of such departments and 
                laboratories; and
                    (B) implement a program to accredit such health 
                departments and laboratories in accordance with such 
                standards.
            (2) Cooperative agreement.--The Secretary may enter into a 
        cooperative agreement with a private nonprofit entity to carry 
        out paragraph (1).
    (i) Report.--The Secretary shall submit to the Congress an annual 
report on progress being made to accredit entities under subsection 
(g), including--
            (1) a strategy, including goals and objectives, for 
        accrediting entities under subsection (g) and achieving the 
        purpose described in subsection (g)(1)(A);
            (2) identification of gaps in research related to core 
        public health infrastructure; and
            (3) recommendations of priority areas for such research.
    (j) Definition.--In this section, the term ``core public health 
infrastructure'' includes--
            (1) workforce capacity and competency;
            (2) laboratory systems;
            (3) testing capacity, including test platforms, mobile 
        testing units, and personnel;
            (4) health information, health information systems, and 
        health information analysis;
            (5) disease surveillance;
            (6) contact tracing;
            (7) communications;
            (8) financing;
            (9) other relevant components of organizational capacity; 
        and
            (10) other related activities.
    (k) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $6,000,000,000, to remain 
available until expended.

SEC. 5. CORE PUBLIC HEALTH INFRASTRUCTURE AND ACTIVITIES FOR CDC.

    (a) In General.--The Secretary of Health and Human Services (in 
this section referred to as the ``Secretary''), acting through the 
Director of the Centers for Disease Control and Prevention, shall 
expand and improve the core public health infrastructure and activities 
of the Centers for Disease Control and Prevention to address unmet and 
emerging public health needs.
    (b) Report.--The Secretary shall submit to the Congress an annual 
report on the activities funded through this section.
    (c) Definition.--In this section, the term ``core public health 
infrastructure'' has the meaning given to such term in section 3.
    (d) Authorization of Appropriations.--To carry out this section, 
there is authorized to be appropriated $1,000,000,000, to remain 
available until expended.

SEC. 6. MODERNIZATION OF STATE AND LOCAL HEALTH INEQUITIES DATA.

    (a) In General.--Not later than 6 months after the date of 
enactment of this Act, the Secretary of Health and Human Services (in 
this section referred to as the ``Secretary''), acting through the 
Director of the Centers for Disease Control and Prevention, shall award 
grants to State, local, and territorial health departments in order to 
support the modernization of data collection methods and infrastructure 
for the purposes of increasing data related to health inequities, such 
as racial, ethnic, socioeconomic, sex, gender, and disability 
disparities. The Secretary shall--
            (1) provide guidance, technical assistance, and information 
        to grantees under this section on best practices regarding 
        culturally competent, accurate, and increased data collection 
        and transmission; and
            (2) track performance of grantees under this section to 
        help improve their health inequities data collection by 
        identifying gaps and taking effective steps to support States, 
        localities, and territories in addressing the gaps.
    (b) Report.--Not later than 1 year after the date on which the 
first grant is awarded under this section, the Secretary shall submit 
to the Committee on Energy and Commerce of the House of Representatives 
and the Committee on Health, Education, Labor, and Pensions of the 
Senate an initial report detailing--
            (1) nationwide best practices for ensuring States and 
        localities collect and transmit health inequities data;
            (2) nationwide trends which hinder the collection and 
        transmission of health inequities data;
            (3) Federal best practices for working with States and 
        localities to ensure culturally competent, accurate, and 
        increased data collection and transmission; and
            (4) any recommended changes to legislative or regulatory 
        authority to help improve and increase health inequities data 
        collection.
    (c) Final Report.--Not later than December 31, 2023, the Secretary 
shall--
            (1) update and finalize the initial report under subsection 
        (b); and
            (2) submit such final report to the committees specified in 
        such subsection.
    (d) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $100,000,000, to remain 
available until expended.

SEC. 7. TRIBAL FUNDING TO RESEARCH HEALTH INEQUITIES INCLUDING COVID-
              19.

    (a) In General.--Not later than 6 months after the date of 
enactment of this Act, the Director of the Indian Health Service, in 
coordination with Tribal epidemiology centers and other Federal 
agencies, as appropriate, shall conduct or support research and field 
studies for the purposes of improved understanding of Tribal health 
inequities among American Indians and Alaska Natives, including with 
respect to--
            (1) disparities related to COVID-19;
            (2) public health surveillance and infrastructure regarding 
        unmet needs in Indian country and Urban Indian communities;
            (3) population-based health disparities;
            (4) barriers to health care services;
            (5) the impact of socioeconomic status; and
            (6) factors contributing to Tribal health inequities.
    (b) Consultation, Confer, and Coordination.--In carrying out this 
section, the Director of the Indian Health Service shall--
            (1) consult with Indian Tribes and Tribal organizations;
            (2) confer with Urban Indian organizations; and
            (3) coordinate with the Director of the Centers for Disease 
        Control and Prevention and the Director of the National 
        Institutes of Health.
    (c) Process.--Not later than 60 days after the date of enactment of 
this Act, the Director of the Indian Health Service shall establish a 
nationally representative panel to establish processes and procedures 
for the research and field studies conducted or supported under 
subsection (a). The Director shall ensure that, at a minimum, the panel 
consists of the following individuals:
            (1) Elected Tribal leaders or their designees.
            (2) Tribal public health practitioners and experts from the 
        national and regional levels.
    (d) Duties.--The panel established under subsection (c) shall, at a 
minimum--
            (1) advise the Director of the Indian Health Service on the 
        processes and procedures regarding the design, implementation, 
        and evaluation of, and reporting on, research and field studies 
        conducted or supported under this section;
            (2) develop and share resources on Tribal public health 
        data surveillance and reporting, including best practices; and
            (3) carry out such other activities as may be appropriate 
        to establish processes and procedures for the research and 
        field studies conducted or supported under subsection (a).
    (e) Report.--Not later than 1 year after expending all funds made 
available to carry out this section, the Director of the Indian Health 
Service, in coordination with the panel established under subsection 
(c), shall submit an initial report on the results of the research and 
field studies under this section to--
            (1) the Committee on Energy and Commerce and the Committee 
        on Natural Resources of the House of Representatives; and
            (2) the Committee on Indian Affairs and the Committee on 
        Health, Education, Labor, and Pensions of the Senate.
    (f) Tribal Data Sovereignty.--The Director of the Indian Health 
Service shall ensure that all research and field studies conducted or 
supported under this section are tribally directed and carried out in a 
manner which ensures Tribal-direction of all data collected under this 
section--
            (1) according to Tribal best practices regarding research 
        design and implementation, including by ensuring the consent of 
        the Tribes involved to public reporting of Tribal data;
            (2) according to all relevant and applicable Tribal, 
        professional, institutional, and Federal standards for 
        conducting research and governing research ethics;
            (3) with the prior and informed consent of any Indian Tribe 
        participating in the research or sharing data for use under 
        this section; and
            (4) in a manner that respects the inherent sovereignty of 
        Indian Tribes, including Tribal governance of data and 
        research.
    (g) Final Report.--Not later than December 31, 2023, the Director 
of the Indian Health Service shall--
            (1) update and finalize the initial report under subsection 
        (e); and
            (2) submit such final report to the committees specified in 
        such subsection.
    (h) Definitions.--In this section:
            (1) The terms ``Indian Tribe'' and ``Tribal organization'' 
        have the meanings given to such terms in section 4 of the 
        Indian Self-Determination and Education Assistance Act (25 
        U.S.C. 5304).
            (2) The term ``Urban Indian organization'' has the meaning 
        given to such term in section 4 of the Indian Health Care 
        Improvement Act (25 U.S.C. 1603).
    (i) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $25,000,000, to remain available 
until expended.

SEC. 8. STUDY EXAMINING PUBLIC HEALTH DATA AND INFRASTRUCTURE NECESSARY 
              DURING AND AFTER THE COVID-19 PUBLIC HEALTH EMERGENCY.

    (a) In General.--The Secretary of Health and Human Services (in 
this section referred to as the ``Secretary'') shall seek to enter into 
a contract with the National Academies of Sciences, Engineering, and 
Medicine (referred to in this section as the ``National Academies'') 
not later than 30 days after the date of enactment of this Act, under 
which the National Academies agree to conduct a study with stakeholders 
from Federal agencies, State, Tribal, territorial, and local 
governments, research institutions, industry, and nonprofit 
organizations that would review the current system for public health 
data infrastructure and reporting and provide recommendations on needed 
data and system improvements for future pandemics and ongoing public 
health needs.
    (b) Submission of Report.--The contract under subsection (a) shall 
require that the study under such subsection be completed, and a report 
on the resulting recommendations be submitted to the Secretary, the 
Committee on Health, Education, Labor, and Pensions of the Senate and 
the Committee on Energy and Commerce of the House of Representatives, 
not later than 12 months after the date the contract was executed.
    (c) Study Topics.--The contract under subsection (a) shall require 
the study under such subsection to--
            (1) review the current public health data systems and the 
        reporting structure for Federal, State, Tribal, territorial, 
        and local public health information, including vital records;
            (2) review current standards for reporting, quality 
        controls, and transparency of the data;
            (3) examine data gaps and barriers to timely and accurate 
        reporting and identify ways to fill those gaps;
            (4) examine how systems can be accessed and used by a wide 
        range of users, including external researchers;
            (5) examine how different data systems interact and how 
        different data sources can be integrated;
            (6) examine nontraditional data sources or alternative data 
        gathering methods that could be used to complement 
        traditionally collected data;
            (7) identify needed improvements to the public health data 
        systems and structure, especially with regard to the needs of 
        Tribal systems;
            (8) identify core elements of a ``minimum data set'' that 
        might be used for State population surveillance, including 
        demographic components that are necessary to ensure health 
        equity in public health decision making;
            (9) examine how surveillance systems can be explicitly 
        designed to ensure vulnerable populations (which may include 
        racial and ethnic minorities, immigrants, individuals in 
        nursing homes, other institutionalized populations, and 
        individuals experiencing homelessness) are included in 
        reporting;
            (10) consider how traditional and nontraditional data might 
        be used to promote health equity across the United States and 
        reduce racial, Tribal, and other demographic disparities;
            (11) examine data gaps and barriers to collecting, 
        analyzing, and using demographic data to characterize the 
        COVID-19 pandemic for public health action and research to 
        improve public health actions and identify ways to fill those 
        gaps; and
            (12) report on what is known based on existing data about 
        how COVID-19 is impacting subgroups of the population with 
        respect to access to testing and treatment (hospitalization and 
        access to drugs and medical equipment), and health outcomes 
        (morbidity and mortality).
    (d) Disaggregation of Data.--To the extent feasible, the contract 
under subsection (a) shall require data to be disaggregated by race, 
ethnicity, age, gender, disability, geography, language, socioeconomic 
status, and other factors.
                                 <all>