I 

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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Ensuring Transparent 

5 Honest Information on COVID–19 Act’’ or the ‘‘ETHIC 

6 Act’’. 


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1 SEC. 2. REQUIRED REPORTING BY STATE, LOCAL, TRIBAL, 

2 OR TERRITORIAL GOVERNMENTS REGARD3 ING COVID–19. 

4 (a) IN GENERAL.—As a condition on receipt of funds 

5 through a covered grant or cooperative agreement, a 

6 State, local, Tribal, or territorial government shall agree 

7 to direct the appropriate State, local, Tribal, or territorial 

8 governmental entity (including any public health depart9 ment thereof) to report to the Centers for Disease Control 

10 and Prevention, with respect to the jurisdiction involved 

11 and COVID–19— 

12 (1) on a daily basis, the information listed in 

13 subsection (c); and 

14 (2) on a weekly basis, the information listed in 

15 subsection (d). 

16 (b) TRIBAL WAIVER.— 

17 (1) REVIEW AND DISPOSITION.—Upon the re18 ceipt of a written request from a Tribal government, 

19 or consortia thereof, for a waiver of the conditions 

20 specified in paragraphs (1) and (2) of subsection 

21 (a), the Director of the Centers for Disease Control 

22 and Prevention shall, not later than 30 days after 

23 receipt of such request, approve or deny it. 

24 (2) DENIALS.—In the case of a denial of a re25 quest under paragraph (1), the Director of the Cen26 ters for Disease Control and Prevention shall— 


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1 (A) provide to the requestor a written ex2 planation of the reasons for the denial; and 

3 (B) provide the requestor with an oppor4 tunity to correct any deficiencies in the request. 

5 (c) COVERED GRANT OR COOPERATIVE AGREE6 MENT.—For purposes of this section, a covered grant or 

7 cooperative agreement is any grant or cooperative agree8 ment awarded under any of the following laws (including 

9 any amendment made thereby): 

10 (1) This Act. 

11 (2) The Coronavirus Preparedness and Re12 sponse Supplemental Appropriations Act, 2020 

13 (Public Law 116–123). 

14 (3) The Families First Coronavirus Response 

15 Act (Public Law 116–127). 

16 (4) The CARES Act (Public Law 116–136). 

17 (5) The Paycheck Protection Program and 

18 Health Care Enhancement Act (Public Law 116– 

19 139). 

20 (d) DAILY REPORTING.—The information to be re21 ported daily pursuant to subsection (a)(1) consists of the 

22 following: 

23 (1) Demographic characteristics, including, in a 

24 de-identified, disaggregated, and stratified manner, 

25 race, ethnicity, age, sex, geographic region, and 


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1 other relevant factors of individuals tested for or di2 agnosed with COVID–19, to the extent such infor3 mation is available. 

4 (2) The number of adults with a confirmed case 

5 of COVID–19 who are hospitalized in an intensive 

6 care bed. 

7 (3) The number of adults with a suspected case 

8 of COVID–19 who are hospitalized in an intensive 

9 care bed. 

10 (4) The number of adults with a confirmed case 

11 of COVID–19 who are hospitalized in an inpatient 

12 care bed. 

13 (5) The number of adults with a suspected case 

14 of COVID–19 who are hospitalized in an inpatient 

15 care bed. 

16 (6) The number of children with a confirmed 

17 case of COVID–19 who are hospitalized in an inten18 sive care bed. 

19 (7) The number of children with a suspected 

20 case of COVID–19 who are hospitalized in an inten21 sive care bed. 

22 (8) The number of children with a confirmed 

23 case of COVID–19 who are hospitalized in an inpa24 tient care bed. 


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1 (9) The number of children with a suspected 

2 case of COVID–19 who are hospitalized in an inpa3 tient care bed. 

4 (10) Out of the maximum number of beds for 

5 which hospitals are licensed to operate, the percent6 age occupied by confirmed or suspected COVID–19 

7 patients. 

8 (11) Total staffed hospital beds. 

9 (12) The numbers of diagnostic and serological 

10 tests administered for COVID–19, disaggregated 

11 and stratified by— 

12 (A) the type of test; and 

13 (B) the testing positivity rate of each type 

14 of test. 

15 (13) The median turnaround time for diag16 nostic tests stratified by molecular and antigen tests. 

17 (14) The percentage of new cases of COVID– 

18 19 linked to at least one other case, and if such new 

19 cases are part of a known outbreak, identification of 

20 such outbreak. 

21 (15) The rate of transmission of COVID–19. 

22 (16) The number of confirmed and probable 

23 deaths as a result of COVID–19, de-identified and 

24 stratified by race, ethnicity, age, sex, geographic re25 gion, and other relevant factors. 


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1 (17) Such other information as the Director of 

2 the Centers for Disease Control and Prevention 

3 deems to be relevant. 

4 (e) WEEKLY REPORTING.—The information to be re5 ported weekly pursuant to subsection (a)(2) consists of the 

6 following: 

7 (1) New infections of health care workers not 

8 confirmed to have contracted COVID–19 outside of 

9 the workplace. 

10 (2) The median time between collection of 

11 specimens for diagnostic tests for COVID–19 and 

12 isolation of cases. 

13 (3) The percentage of new cases of COVID–19 

14 among quarantined contacts. 

15 (4) Such other information as the Director of 

16 the Centers for Disease Control and Prevention 

17 deems to be relevant. 

18 (f) PUBLIC POSTING OF REPORTED DATA.—On a 

19 daily basis, the Director of the Centers for Disease Control 

20 and Prevention shall make the information reported pur21 suant to this section, excluding personally identifiable in22 formation, publicly available on the website of the Centers 

23 for Disease Control and Prevention. 

24 (g) APPLICABILITY.—The condition on funding in 

25 subsection (a) applies with respect to the obligation and 


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1 expenditure by the Federal Government of funds through 

2 a covered grant or cooperative agreement on or after the 

3 date of enactment of this Act, including with respect to 

4 covered grants and cooperative agreements awarded before 

5 such date. 

6 SEC. 3. PUBLIC HEALTH DATA SYSTEM TRANSFORMATION. 

7 Subtitle C of title XXVIII of the Public Health Serv8 ice Act (42 U.S.C. 300hh–31 et seq.) is amended by add9 ing at the end the following: 

10 ‘‘SEC. 2823. PUBLIC HEALTH DATA SYSTEM TRANS11 FORMATION. 

12 ‘‘(a) EXPANDING CDC AND PUBLIC HEALTH DE13 PARTMENT CAPABILITIES.— 

14 ‘‘(1) IN GENERAL.—The Secretary, acting 

15 through the Director of the Centers for Disease 

16 Control and Prevention, shall— 

17 ‘‘(A) conduct activities to expand, enhance, 

18 and improve applicable public health data sys19 tems used by the Centers for Disease Control 

20 and Prevention, related to the interoperability 

21 and improvement of such systems (including as 

22 it relates to preparedness for, prevention and 

23 detection of, and response to public health 

24 emergencies); and 


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1 ‘‘(B) award grants or cooperative agree2 ments to State, local, Tribal, or territorial pub3 lic health departments for the expansion and 

4 modernization of public health data systems, to 

5 assist public health departments in— 

6 ‘‘(i) assessing current data infrastruc7 ture capabilities and gaps to improve and 

8 increase consistency in data collection, 

9 storage, and analysis and, as appropriate, 

10 to improve dissemination of public health11 related information; 

12 ‘‘(ii) improving secure public health 

13 data collection, transmission, exchange, 

14 maintenance, and analysis; 

15 ‘‘(iii) improving the secure exchange 

16 of data between the Centers for Disease 

17 Control and Prevention, State, local, Trib18 al, and territorial public health depart19 ments, public health organizations, and 

20 health care providers, including by public 

21 health officials in multiple jurisdictions 

22 within such State, as appropriate, and by 

23 simplifying and supporting reporting by 

24 health care providers, as applicable, pursuVerDate Sep 11 2014 21:56 Sep 14, 2020 Jkt 099200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H8205.IH H8205

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1 ant to State law, including through the use 

2 of health information technology; 

3 ‘‘(iv) enhancing the interoperability of 

4 public health data systems (including sys5 tems created or accessed by public health 

6 departments) with health information tech7 nology, including with health information 

8 technology certified under section 

9 3001(c)(5); 

10 ‘‘(v) supporting and training data sys11 tems, data science, and informatics per12 sonnel; 

13 ‘‘(vi) supporting earlier disease and 

14 health condition detection, such as through 

15 near real-time data monitoring, to support 

16 rapid public health responses; 

17 ‘‘(vii) supporting activities within the 

18 applicable jurisdiction related to the expan19 sion and modernization of electronic case 

20 reporting; and 

21 ‘‘(viii) developing and disseminating 

22 information related to the use and impor23 tance of public health data. 

24 ‘‘(2) DATA STANDARDS.—In carrying out para25 graph (1), the Secretary, acting through the DirecVerDate Sep 11 2014 21:56 Sep 14, 2020 Jkt 099200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H8205.IH H8205

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1 tor of the Centers for Disease Control and Preven2 tion, shall, as appropriate and in consultation with 

3 the National Coordinator for Health Information 

4 Technology and the Director of the Indian Health 

5 Service, designate data and technology standards 

6 (including standards for interoperability) for public 

7 health data systems, with deference given to stand8 ards published by consensus-based standards devel9 opment organizations with public input and vol10 untary consensus-based standards bodies. 

11 ‘‘(3) TRIBAL CONSULTATION.—The Director of 

12 the Centers for Disease Control and Prevention, the 

13 National Coordinator for Health Information Tech14 nology, and Director of the Indian Health Service, 

15 shall jointly consult with Indian Tribes and Tribal 

16 organizations prior to designating the data and tech17 nology standards under paragraph (2). 

18 ‘‘(4) PUBLIC-PRIVATE PARTNERSHIPS.—The 

19 Secretary may develop and utilize public-private 

20 partnerships for technical assistance, training, and 

21 related implementation support for State, local, 

22 Tribal, and territorial public health departments, 

23 and the Centers for Disease Control and Prevention, 

24 on the expansion and modernization of electronic 


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1 case reporting and public health data systems, as 

2 applicable. 

3 ‘‘(b) REQUIREMENTS.— 

4 ‘‘(1) HEALTH INFORMATION TECHNOLOGY

5 STANDARDS.—The Secretary may not award a grant 

6 or cooperative agreement under subsection (a)(1)(B) 

7 unless the applicant uses or agrees to use standards 

8 endorsed by the National Coordinator for Health In9 formation Technology pursuant to section 

10 3001(c)(1) or adopted by the Secretary under sec11 tion 3004. 

12 ‘‘(2) WAIVER.—The Secretary may waive the 

13 requirement under paragraph (1) with respect to an 

14 applicant if the Secretary determines that the activi15 ties under subsection (a)(1)(B) cannot otherwise be 

16 carried out within the applicable jurisdiction. 

17 ‘‘(3) APPLICATION.—A State, local, Tribal, or 

18 territorial health department applying for a grant or 

19 cooperative agreement under this section shall sub20 mit an application to the Secretary at such time and 

21 in such manner as the Secretary may require. Such 

22 application shall include information describing— 

23 ‘‘(A) the activities that will be supported 

24 by the grant or cooperative agreement; and 


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1 ‘‘(B) how the modernization of the public 

2 health data systems involved will support or im3 pact the public health infrastructure of the 

4 health department, including a description of 

5 remaining gaps, if any, and the actions needed 

6 to address such gaps. 

7 ‘‘(c) STRATEGY AND IMPLEMENTATION PLAN.—Not 

8 later than 180 days after the date of enactment of this 

9 section, the Secretary, acting through the Director of the 

10 Centers for Disease Control and Prevention, shall submit 

11 to the Committee on Health, Education, Labor, and Pen12 sions of the Senate and the Committee on Energy and 

13 Commerce of the House of Representatives a coordinated 

14 strategy and an accompanying implementation plan that 

15 identifies and demonstrates the measures the Secretary 

16 will utilize to— 

17 ‘‘(1) update and improve applicable public 

18 health data systems used by the Centers for Disease 

19 Control and Prevention; and 

20 ‘‘(2) carry out the activities described in this 

21 section to support the improvement of State, local, 

22 Tribal, and territorial public health data systems. 

23 ‘‘(d) CONSULTATION.—The Secretary, acting 

24 through the Director of the Centers for Disease Control 

25 and Prevention, shall consult with State, local, Tribal, and 


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1 territorial health departments, professional medical and 

2 public health associations, associations representing hos3 pitals or other health care entities, health information 

4 technology experts, and other appropriate public or private 

5 entities regarding the implementation of the grant pro6 gram under subsection (a) and the development of the co7 ordinated strategy and accompanying implementation plan 

8 under subsection (c). 

9 ‘‘(e) TECHNICAL ASSISTANCE AND TRAINING.—In 

10 carrying out this section, the Secretary may provide tech11 nical assistance and training related to— 

12 ‘‘(1) the exchange of information by public 

13 health data systems used by relevant health care and 

14 public health entities at the local, State, Federal, 

15 Tribal, and territorial levels; or 

16 ‘‘(2) the development and utilization of public17 private partnerships for implementation support ap18 plicable to this section. 

19 ‘‘(f) REPORT TO CONGRESS.—Not later than 1 year 

20 after the date of enactment of this section, the Secretary 

21 shall submit a report to the Committee on Health, Edu22 cation, Labor, and Pensions of the Senate and the Com23 mittee on Energy and Commerce of the House of Rep24 resentatives that includes— 

25 ‘‘(1) a description of any barriers to— 


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1 ‘‘(A) public health authorities imple2 menting interoperable public health data sys3 tems and electronic case reporting; 

4 ‘‘(B) the exchange of information pursuant 

5 to electronic case reporting; or 

6 ‘‘(C) reporting by health care providers 

7 using such public health data systems, as ap8 propriate, and pursuant to State law; 

9 ‘‘(2) an assessment of the potential public 

10 health impact of implementing electronic case re11 porting and interoperable public health data sys12 tems; and 

13 ‘‘(3) a description of the activities carried out 

14 pursuant to this section. 

15 ‘‘(g) ELECTRONIC CASE REPORTING.—In this sec16 tion, the term ‘electronic case reporting’ means the auto17 mated identification, generation, and bilateral exchange of 

18 reports of health events among electronic health record or 

19 health information technology systems and public health 

20 authorities. 

21 ‘‘(h) AUTHORIZATION OF APPROPRIATIONS.—To 

22 carry out this section, there is authorized to be appro23 priated $450,000,000, to remain available until expended. 

24 ‘‘(i) TRIBAL SET-ASIDE.—Of the amounts authorized 

25 under subsection (h), no less than 3 percent, but up to 


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1 5 percent of such funds, shall be reserved for noncompeti2 tive grants or cooperative agreements to Indian Tribes and 

3 Tribal organizations (as those terms are defined under 

4 section 4 of the Indian Self-Determination and Education 

5 Assistance Act).’’. 

6 SEC. 4. CORE PUBLIC HEALTH INFRASTRUCTURE FOR 

7 STATE, LOCAL, TRIBAL, AND TERRITORIAL 

8 HEALTH DEPARTMENTS. 

9 (a) PROGRAM.—The Secretary of Health and Human 

10 Services (in this section referred to as the ‘‘Secretary’’), 

11 acting through the Director of the Centers for Disease 

12 Control and Prevention, shall establish a core public 

13 health infrastructure program consisting of awarding 

14 grants under subsection (b). 

15 (b) GRANTS.— 

16 (1) AWARD.—For the purpose of addressing 

17 core public health infrastructure needs, the Sec18 retary— 

19 (A) shall award a grant to each State 

20 health department; 

21 (B) shall award grants to, or enter into co22 operative agreements with, Indian Tribes and 

23 Tribal organizations on a noncompetitive basis; 

24 and 


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1 (C) may award grants on a competitive 

2 basis to State, local, Tribal, or territorial health 

3 departments. 

4 (2) ALLOCATION.—Of the total amount of 

5 funds awarded as grants under this subsection for a 

6 fiscal year— 

7 (A) not less than 50 percent shall be for 

8 grants to State health departments under para9 graph (1)(A); 

10 (B) not less than 5 percent shall be for 

11 grants awarded to, or cooperative agreements 

12 with, Indian Tribes and Tribal organizations 

13 under paragraph (1)(B); and 

14 (C) not less than 30 percent shall be for 

15 grants to State, local, Tribal, or territorial 

16 health departments under paragraph (1)(C). 

17 (c) USE OF FUNDS.—A State, local, Tribal, or terri18 torial health department receiving a grant under sub19 section (b) shall use the grant funds to address core public 

20 health infrastructure needs, including those identified in 

21 the accreditation process under subsection (g). 

22 (d) FORMULA GRANTS TO STATE HEALTH DEPART23 MENTS.—In making grants under subsection (b)(1)(A), 

24 the Secretary shall award funds to each State health de25 partment in accordance with— 


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1 (1) a formula based on population size, burden 

2 of preventable disease and disability, and core public 

3 health infrastructure gaps, including those identified 

4 in the accreditation process under subsection (g); 

5 and 

6 (2) application requirements established by the 

7 Secretary, including a requirement that the State 

8 health department submit a plan that demonstrates 

9 to the satisfaction of the Secretary that the State’s 

10 health department will— 

11 (A) address its highest priority core public 

12 health infrastructure needs; and 

13 (B) as appropriate, allocate funds to local 

14 health departments within the State. 

15 (e) FORMULA GRANTS TO INDIAN TRIBES AND TRIB16 AL ORGANIZATIONS.—In making grants under subsection 

17 (b)(1)(B), the Secretary shall coordinate with the Director 

18 of the Indian Health Service to award funds to Indian 

19 Tribes and Tribal organizations according to— 

20 (1) a formula that ensures baseline funding on 

21 a noncompetitive basis for each Indian Tribe or 

22 Tribal organization, or a consortia thereof, that sub23 mits an application; and 

24 (2) awards funds above the baseline according 

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1 ture, or other criteria derived through consultation 

2 with Indian Tribes and Tribal organizations. 

3 (f) COMPETITIVE GRANTS TO STATE, LOCAL, TRIB4 AL, AND TERRITORIAL HEALTH DEPARTMENTS.—In 

5 making grants under subsection (b)(1)(C), the Secretary 

6 shall give priority to applicants demonstrating core public 

7 health infrastructure needs identified in the accreditation 

8 process under subsection (g). 

9 (g) MAINTENANCE OF EFFORT.— 

10 (1) IN GENERAL.—Except as provided in para11 graph (2), the Secretary may award a grant to an 

12 entity under subsection (b) only if the entity dem13 onstrates to the satisfaction of the Secretary that— 

14 (A) funds received through the grant will 

15 be expended only to supplement, and not sup16 plant, non-Federal and Federal funds otherwise 

17 available to the entity for the purpose of ad18 dressing core public health infrastructure needs; 

19 and 

20 (B) with respect to activities for which the 

21 grant is awarded, the entity will maintain ex22 penditures of non-Federal amounts for such ac23 tivities at a level not less than the level of such 

24 expenditures maintained by the entity for the 


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1 fiscal year preceding the fiscal year for which 

2 the entity receives the grant. 

3 (2) EXCEPTION.—The requirement under para4 graph (1) shall not apply with respect to a grant 

5 awarded under subsection (b)(1)(B). 

6 (h) ESTABLISHMENT OF A PUBLIC HEALTH ACCRED7 ITATION PROGRAM.— 

8 (1) IN GENERAL.—The Secretary shall— 

9 (A) develop, and periodically review and 

10 update, standards for voluntary accreditation of 

11 State, local, Tribal, and territorial health de12 partments and public health laboratories for the 

13 purpose of advancing the quality and perform14 ance of such departments and laboratories; and 

15 (B) implement a program to accredit such 

16 health departments and laboratories in accord17 ance with such standards. 

18 (2) COOPERATIVE AGREEMENT.—The Secretary 

19 may enter into a cooperative agreement with a pri20 vate nonprofit entity to carry out paragraph (1). 

21 (i) REPORT.—The Secretary shall submit to the Con22 gress an annual report on progress being made to accredit 

23 entities under subsection (g), including— 

24 (1) a strategy, including goals and objectives, 

25 for accrediting entities under subsection (g) and 


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1 achieving the purpose described in subsection 

2 (g)(1)(A); 

3 (2) identification of gaps in research related to 

4 core public health infrastructure; and 

5 (3) recommendations of priority areas for such 

6 research. 

7 (j) DEFINITION.—In this section, the term ‘‘core pub8 lic health infrastructure’’ includes— 

9 (1) workforce capacity and competency; 

10 (2) laboratory systems; 

11 (3) testing capacity, including test platforms, 

12 mobile testing units, and personnel; 

13 (4) health information, health information sys14 tems, and health information analysis; 

15 (5) disease surveillance; 

16 (6) contact tracing; 

17 (7) communications; 

18 (8) financing; 

19 (9) other relevant components of organizational 

20 capacity; and 

21 (10) other related activities. 

22 (k) AUTHORIZATION OF APPROPRIATIONS.—To carry 

23 out this section, there is authorized to be appropriated 

24 $6,000,000,000, to remain available until expended. 


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1 SEC. 5. CORE PUBLIC HEALTH INFRASTRUCTURE AND AC2 TIVITIES FOR CDC. 

3 (a) IN GENERAL.—The Secretary of Health and 

4 Human Services (in this section referred to as the ‘‘Sec5 retary’’), acting through the Director of the Centers for 

6 Disease Control and Prevention, shall expand and improve 

7 the core public health infrastructure and activities of the 

8 Centers for Disease Control and Prevention to address 

9 unmet and emerging public health needs. 

10 (b) REPORT.—The Secretary shall submit to the Con11 gress an annual report on the activities funded through 

12 this section. 

13 (c) DEFINITION.—In this section, the term ‘‘core 

14 public health infrastructure’’ has the meaning given to 

15 such term in section 3. 

16 (d) AUTHORIZATION OF APPROPRIATIONS.—To carry 

17 out this section, there is authorized to be appropriated 

18 $1,000,000,000, to remain available until expended. 

19 SEC. 6. MODERNIZATION OF STATE AND LOCAL HEALTH IN20 EQUITIES DATA. 

21 (a) IN GENERAL.—Not later than 6 months after the 

22 date of enactment of this Act, the Secretary of Health and 

23 Human Services (in this section referred to as the ‘‘Sec24 retary’’), acting through the Director of the Centers for 

25 Disease Control and Prevention, shall award grants to 

26 State, local, and territorial health departments in order 


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1 to support the modernization of data collection methods 

2 and infrastructure for the purposes of increasing data re3 lated to health inequities, such as racial, ethnic, socio4 economic, sex, gender, and disability disparities. The Sec5 retary shall— 

6 (1) provide guidance, technical assistance, and 

7 information to grantees under this section on best 

8 practices regarding culturally competent, accurate, 

9 and increased data collection and transmission; and 

10 (2) track performance of grantees under this 

11 section to help improve their health inequities data 

12 collection by identifying gaps and taking effective 

13 steps to support States, localities, and territories in 

14 addressing the gaps. 

15 (b) REPORT.—Not later than 1 year after the date 

16 on which the first grant is awarded under this section, 

17 the Secretary shall submit to the Committee on Energy 

18 and Commerce of the House of Representatives and the 

19 Committee on Health, Education, Labor, and Pensions of 

20 the Senate an initial report detailing— 

21 (1) nationwide best practices for ensuring 

22 States and localities collect and transmit health in23 equities data; 

24 (2) nationwide trends which hinder the collec25 tion and transmission of health inequities data; 


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1 (3) Federal best practices for working with 

2 States and localities to ensure culturally competent, 

3 accurate, and increased data collection and trans4 mission; and 

5 (4) any recommended changes to legislative or 

6 regulatory authority to help improve and increase 

7 health inequities data collection. 

8 (c) FINAL REPORT.—Not later than December 31, 

9 2023, the Secretary shall— 

10 (1) update and finalize the initial report under 

11 subsection (b); and 

12 (2) submit such final report to the committees 

13 specified in such subsection. 

14 (d) AUTHORIZATION OF APPROPRIATIONS.—There is 

15 authorized to be appropriated to carry out this section 

16 $100,000,000, to remain available until expended. 

17 SEC. 7. TRIBAL FUNDING TO RESEARCH HEALTH INEQUI18 TIES INCLUDING COVID–19. 

19 (a) IN GENERAL.—Not later than 6 months after the 

20 date of enactment of this Act, the Director of the Indian 

21 Health Service, in coordination with Tribal epidemiology 

22 centers and other Federal agencies, as appropriate, shall 

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1 ties among American Indians and Alaska Natives, includ2 ing with respect to— 

3 (1) disparities related to COVID–19; 

4 (2) public health surveillance and infrastructure 

5 regarding unmet needs in Indian country and Urban 

6 Indian communities; 

7 (3) population-based health disparities; 

8 (4) barriers to health care services; 

9 (5) the impact of socioeconomic status; and 

10 (6) factors contributing to Tribal health inequi11 ties. 

12 (b) CONSULTATION, CONFER, AND COORDINATION.— 

13 In carrying out this section, the Director of the Indian 

14 Health Service shall— 

15 (1) consult with Indian Tribes and Tribal orga16 nizations; 

17 (2) confer with Urban Indian organizations; 

18 and 

19 (3) coordinate with the Director of the Centers 

20 for Disease Control and Prevention and the Director 

21 of the National Institutes of Health. 

22 (c) PROCESS.—Not later than 60 days after the date 

23 of enactment of this Act, the Director of the Indian Health 

24 Service shall establish a nationally representative panel to 

25 establish processes and procedures for the research and 


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1 field studies conducted or supported under subsection (a). 

2 The Director shall ensure that, at a minimum, the panel 

3 consists of the following individuals: 

4 (1) Elected Tribal leaders or their designees. 

5 (2) Tribal public health practitioners and ex6 perts from the national and regional levels. 

7 (d) DUTIES.—The panel established under subsection 

8 (c) shall, at a minimum— 

9 (1) advise the Director of the Indian Health 

10 Service on the processes and procedures regarding 

11 the design, implementation, and evaluation of, and 

12 reporting on, research and field studies conducted or 

13 supported under this section; 

14 (2) develop and share resources on Tribal pub15 lic health data surveillance and reporting, including 

16 best practices; and 

17 (3) carry out such other activities as may be 

18 appropriate to establish processes and procedures for 

19 the research and field studies conducted or sup20 ported under subsection (a). 

21 (e) REPORT.—Not later than 1 year after expending 

22 all funds made available to carry out this section, the Di23 rector of the Indian Health Service, in coordination with 

24 the panel established under subsection (c), shall submit 


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1 an initial report on the results of the research and field 

2 studies under this section to— 

3 (1) the Committee on Energy and Commerce 

4 and the Committee on Natural Resources of the 

5 House of Representatives; and 

6 (2) the Committee on Indian Affairs and the 

7 Committee on Health, Education, Labor, and Pen8 sions of the Senate. 

9 (f) TRIBAL DATA SOVEREIGNTY.—The Director of 

10 the Indian Health Service shall ensure that all research 

11 and field studies conducted or supported under this sec12 tion are tribally directed and carried out in a manner 

13 which ensures Tribal-direction of all data collected under 

14 this section— 

15 (1) according to Tribal best practices regarding 

16 research design and implementation, including by 

17 ensuring the consent of the Tribes involved to public 

18 reporting of Tribal data; 

19 (2) according to all relevant and applicable 

20 Tribal, professional, institutional, and Federal 

21 standards for conducting research and governing re22 search ethics; 

23 (3) with the prior and informed consent of any 

24 Indian Tribe participating in the research or sharing 

25 data for use under this section; and 


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1 (4) in a manner that respects the inherent sov2 ereignty of Indian Tribes, including Tribal govern3 ance of data and research. 

4 (g) FINAL REPORT.—Not later than December 31, 

5 2023, the Director of the Indian Health Service shall— 

6 (1) update and finalize the initial report under 

7 subsection (e); and 

8 (2) submit such final report to the committees 

9 specified in such subsection. 

10 (h) DEFINITIONS.—In this section: 

11 (1) The terms ‘‘Indian Tribe’’ and ‘‘Tribal or12 ganization’’ have the meanings given to such terms 

13 in section 4 of the Indian Self-Determination and 

14 Education Assistance Act (25 U.S.C. 5304). 

15 (2) The term ‘‘Urban Indian organization’’ has 

16 the meaning given to such term in section 4 of the 

17 Indian Health Care Improvement Act (25 U.S.C. 

18 1603). 

19 (i) AUTHORIZATION OF APPROPRIATIONS.—There is 

20 authorized to be appropriated to carry out this section 

21 $25,000,000, to remain available until expended. 


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1 SEC. 8. STUDY EXAMINING PUBLIC HEALTH DATA AND IN2 FRASTRUCTURE NECESSARY DURING AND 

3 AFTER THE COVID–19 PUBLIC HEALTH EMER4 GENCY. 

5 (a) IN GENERAL.—The Secretary of Health and 

6 Human Services (in this section referred to as the ‘‘Sec7 retary’’) shall seek to enter into a contract with the Na8 tional Academies of Sciences, Engineering, and Medicine 

9 (referred to in this section as the ‘‘National Academies’’) 

10 not later than 30 days after the date of enactment of this 

11 Act, under which the National Academies agree to conduct 

12 a study with stakeholders from Federal agencies, State, 

13 Tribal, territorial, and local governments, research institu14 tions, industry, and nonprofit organizations that would re15 view the current system for public health data infrastruc16 ture and reporting and provide recommendations on need17 ed data and system improvements for future pandemics 

18 and ongoing public health needs. 

19 (b) SUBMISSION OF REPORT.—The contract under 

20 subsection (a) shall require that the study under such sub21 section be completed, and a report on the resulting rec22 ommendations be submitted to the Secretary, the Com23 mittee on Health, Education, Labor, and Pensions of the 

24 Senate and the Committee on Energy and Commerce of 

25 the House of Representatives, not later than 12 months 

26 after the date the contract was executed. 


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1 (c) STUDY TOPICS.—The contract under subsection 

2 (a) shall require the study under such subsection to— 

3 (1) review the current public health data sys4 tems and the reporting structure for Federal, State, 

5 Tribal, territorial, and local public health informa6 tion, including vital records; 

7 (2) review current standards for reporting, 

8 quality controls, and transparency of the data; 

9 (3) examine data gaps and barriers to timely 

10 and accurate reporting and identify ways to fill 

11 those gaps; 

12 (4) examine how systems can be accessed and 

13 used by a wide range of users, including external re14 searchers; 

15 (5) examine how different data systems interact 

16 and how different data sources can be integrated; 

17 (6) examine nontraditional data sources or al18 ternative data gathering methods that could be used 

19 to complement traditionally collected data; 

20 (7) identify needed improvements to the public 

21 health data systems and structure, especially with 

22 regard to the needs of Tribal systems; 

23 (8) identify core elements of a ‘‘minimum data 

24 set’’ that might be used for State population surveil25 lance, including demographic components that are 


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1 necessary to ensure health equity in public health 

2 decision making; 

3 (9) examine how surveillance systems can be ex4 plicitly designed to ensure vulnerable populations 

5 (which may include racial and ethnic minorities, im6 migrants, individuals in nursing homes, other insti7 tutionalized populations, and individuals experi8 encing homelessness) are included in reporting; 

9 (10) consider how traditional and nontradi10 tional data might be used to promote health equity 

11 across the United States and reduce racial, Tribal, 

12 and other demographic disparities; 

13 (11) examine data gaps and barriers to col14 lecting, analyzing, and using demographic data to 

15 characterize the COVID–19 pandemic for public 

16 health action and research to improve public health 

17 actions and identify ways to fill those gaps; and 

18 (12) report on what is known based on existing 

19 data about how COVID–19 is impacting subgroups 

20 of the population with respect to access to testing 

21 and treatment (hospitalization and access to drugs 

22 and medical equipment), and health outcomes (mor23 bidity and mortality). 

24 (d) DISAGGREGATION OF DATA.—To the extent fea25 sible, the contract under subsection (a) shall require data 


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1 to be disaggregated by race, ethnicity, age, gender, dis2 ability, geography, language, socioeconomic status, and 

3 other factors. 

Æ 


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