II 

117TH CONGRESS 

2D SESSION S. 3913 

To amend the Public Health Service Act with respect to public health data 

accessibility, and for other purposes. 

IN THE SENATE OF THE UNITED STATES 

MARCH 24, 2022 

Mr. KAINE (for himself, Ms. BALDWIN, Ms. SMITH, and Mr. MURPHY) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions 

A BILL 

To amend the Public Health Service Act with respect to 

public health data accessibility, 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 ‘‘Improving Data Acces5 sibility Through Advancements in Public Health Act’’ or 

6 the ‘‘Improving DATA in Public Health Act’’. 


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1 SEC. 2. SUPPORTING PUBLIC HEALTH DATA AVAILABILITY 

2 AND ACCESS. 

3 (a) DESIGNATION OF PUBLIC HEALTH DATA STAND4 ARDS.—Section 2823(a)(2) of the Public Health Service 

5 Act (42 U.S.C. 300hh–33(a)(2)) is amended— 

6 (1) by striking ‘‘In carrying out’’ and inserting 

7 the following: 

8 ‘‘(A) IN GENERAL.—In carrying out’’; 

9 (2) by striking ‘‘shall, as appropriate and’’ and 

10 inserting ‘‘shall, not later than 2 years after the date 

11 of enactment of the Improving DATA in Public 

12 Health Act,’’; and 

13 (3) by adding at the end the following: 

14 ‘‘(B) SELECTION OF DATA AND TECH15 NOLOGY STANDARDS.—The standards des16 ignated as described in subparagraph (A) may 

17 include standards to improve— 

18 ‘‘(i) the exchange of electronic health 

19 information for— 

20 ‘‘(I) electronic case reporting; 

21 ‘‘(II) syndromic surveillance; 

22 ‘‘(III) reporting of vital statistics; 

23 and 

24 ‘‘(IV) reporting test orders and 

25 results electronically, including from 

26 laboratories; 


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1 ‘‘(ii) automated electronic reporting to 

2 relevant public health data systems of the 

3 Centers for Disease Control and Preven4 tion; and 

5 ‘‘(iii) such other use cases as the Sec6 retary determines appropriate. 

7 ‘‘(C) NO DUPLICATIVE EFFORTS.— 

8 ‘‘(i) IN GENERAL.—In carrying out 

9 the requirements of this paragraph, the 

10 Secretary, in consultation with the Office 

11 of the National Coordinator for Health In12 formation Technology, may use input gath13 ered (including input and recommendations 

14 gathered from the Health Information 

15 Technology Advisory Committee), and ma16 terials developed, prior to the date of en17 actment of the Improving DATA in Public 

18 Health Act. 

19 ‘‘(ii) DESIGNATION OF STANDARDS.— 

20 Consistent with sections 13111 and 13112 

21 of the HITECH Act, the data and tech22 nology standards designated pursuant to 

23 this paragraph shall align with the stand24 ards and implementation specifications 


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1 previously adopted by the Secretary pursu2 ant to section 3004, as applicable. 

3 ‘‘(D) PRIVACY AND SECURITY.—Nothing 

4 in this paragraph shall be construed as modi5 fying applicable Federal or State information 

6 privacy or security law. 

7 ‘‘(E) CONSIDERATIONS.—Standards des8 ignated under this paragraph shall include 

9 standards and implementation specifications 

10 necessary to ensure the appropriate capture, ex11 change, access, and use, of information regard12 ing race, ethnicity, sex (including sexual ori13 entation and gender identity), disability status, 

14 veteran status, housing status, age, functional 

15 status, and other elements.’’. 

16 (b) STUDY ON LABORATORY INFORMATION STAND17 ARDS.— 

18 (1) IN GENERAL.—Not later than 1 year after 

19 the date of enactment of this Act, the Office of the 

20 National Coordinator for Health Information Tech21 nology shall conduct a study to review the use of 

22 standards for electronic ordering and reporting of 

23 laboratory test results. 

24 (2) AREAS OF CONCENTRATION.—In conducting 

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1 tional Coordinator for Health Information Tech2 nology shall— 

3 (A) determine the extent to which clinical 

4 laboratories are using standards for electronic 

5 ordering and reporting of laboratory test re6 sults; 

7 (B) assess trends in laboratory compliance 

8 with standards for ordering and reporting lab9 oratory test results and the effect of such 

10 trends on the interoperability of laboratory data 

11 with public health data systems; 

12 (C) identify challenges related to collection 

13 and reporting of demographic and other data 

14 elements with respect to laboratory test results; 

15 (D) identify any challenges associated with 

16 using or complying with standards and report17 ing laboratory test results with data elements 

18 identified in standards for electronic ordering 

19 and reporting of such results; and 

20 (E) review other relevant areas determined 

21 appropriate by the Office of the National Coor22 dinator for Health Information Technology. 

23 (3) REPORT.—Not later than 2 years after the 

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1 nology shall submit to the Committee on Health, 

2 Education, Labor, and Pensions of the Senate and 

3 the Committee on Energy and Commerce of the 

4 House of Representatives a report concerning the 

5 findings of the study conducted under paragraph 

6 (1). 

7 (c) SUPPORTING INFORMATION SHARING THROUGH

8 DATA USE AGREEMENTS.— 

9 (1) INTERAGENCY DATA USE AGREEMENTS

10 WITHIN THE DEPARTMENT OF HEALTH AND HUMAN

11 SERVICES FOR PUBLIC HEALTH EMERGENCIES.— 

12 (A) IN GENERAL.—The Secretary of 

13 Health and Human Services (referred to in this 

14 subsection as the ‘‘Secretary’’) shall, as appro15 priate, facilitate the development of, or updates 

16 to, memoranda of understanding, data use 

17 agreements, or other applicable interagency 

18 agreements regarding appropriate access, ex19 change, and use of public health data between 

20 the Centers for Disease Control and Prevention, 

21 the Office of the Assistant Secretary for Pre22 paredness and Response, other relevant agen23 cies or offices within the Department of Health 

24 and Human Services, and other relevant Fed25 eral agencies, in order to prepare for, identify, 


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1 monitor, and respond to declared or potential 

2 public health emergencies. 

3 (B) REQUIREMENTS.—In carrying out ac4 tivities pursuant to subparagraph (A), the Sec5 retary shall— 

6 (i) ensure that the agreements and 

7 memoranda of understanding described in 

8 such subparagraph— 

9 (I) address the methods of grant10 ing access to data held by one agency 

11 or office with another to support the 

12 respective missions of such agencies 

13 or offices; 

14 (II) consider minimum necessary 

15 principles of data sharing for appro16 priate use; 

17 (III) include appropriate privacy 

18 and cybersecurity protections; and 

19 (IV) are subject to regular up20 dates, as appropriate; 

21 (ii) collaborate with the Centers for 

22 Disease Control and Prevention, the Office 

23 of the Assistant Secretary for Prepared24 ness and Response, the Office of the Chief 

25 Information Officer, and, as appropriate, 


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1 the Office of the National Coordinator for 

2 Health Information Technology, and other 

3 entities within the Department of Health 

4 and Human Services; and 

5 (iii) consider the terms and conditions 

6 of any existing data use agreements with 

7 other public or private entities and any 

8 need for updates to such existing agree9 ments, consistent with paragraph (2). 

10 (2) DATA USE AGREEMENTS WITH EXTERNAL

11 ENTITIES.—The Secretary, acting through the Di12 rector of the Centers for Disease Control and Pre13 vention and the Assistant Secretary for Prepared14 ness and Response, may update memoranda of un15 derstanding, data use agreements, or other applica16 ble agreements and contracts to improve appropriate 

17 access, exchange, and use of public health data be18 tween the Centers for Disease Control and Preven19 tion and the Office of the Assistant Secretary for 

20 Preparedness and Response and external entities, in21 cluding State, Tribal, and territorial health depart22 ments, laboratories, hospitals and other health care 

23 providers, electronic health records vendors, and 

24 other entities, as applicable and appropriate, in 


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1 order to prepare for, identify, monitor, and respond 

2 to declared or potential public health emergencies. 

3 (3) REPORT.—Not later than 90 days after the 

4 date of enactment of this Act, the Secretary shall re5 port to the Committee on Health, Education, Labor, 

6 and Pensions of the Senate and the Committee on 

7 Energy and Commerce of the House of Representa8 tives on the status of the agreements under this sub9 section. 

10 (d) IMPROVING INFORMATION SHARING AND AVAIL11 ABILITY OF PUBLIC HEALTH DATA.—Part A of title III 

12 of the Public Health Service Act (42 U.S.C. 241 et seq.) 

13 is amended by adding at the end the following: 

14 ‘‘SEC. 310B. IMPROVING INFORMATION SHARING AND 

15 AVAILABILITY OF PUBLIC HEALTH DATA. 

16 ‘‘(a) IN GENERAL.—The Secretary, acting through 

17 the Director of the Centers for Disease Control and Pre18 vention, may require the reporting of public health and 

19 health care data and information to the Centers for Dis20 ease Control and Prevention by— 

21 ‘‘(1) health care providers and facilities, includ22 ing pharmacies; 

23 ‘‘(2) public health, clinical, and other labora24 tories and diagnostic testing entities; 


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1 ‘‘(3) State, local, and Tribal health depart2 ments; 

3 ‘‘(4) health information exchanges and health 

4 information networks; and 

5 ‘‘(5) other entities, as determined by the Sec6 retary. 

7 ‘‘(b) CONTENT, FORM, AND MANNER.—The Sec8 retary shall prescribe the content, form, manner, and fre9 quency of the reporting of public health and health care 

10 data and information required by subsection (a), including 

11 necessary demographic data or other data elements that 

12 the Secretary determines is necessary for public health 

13 surveillance under this section. The Secretary may collabo14 rate with representatives of State, local, and Tribal health 

15 departments and other entities, in developing the content, 

16 form, manner, and frequency requirement under this sub17 section. Such requirements shall align with the standards 

18 and implementation specifications adopted by the Sec19 retary under section 3004, as applicable. 

20 ‘‘(c) DECREASED BURDEN.—The Secretary shall 

21 make reasonable efforts to limit public health and health 

22 care data and information reported under this section to 

23 the minimum necessary information needed to accomplish 

24 the intended public health purpose. 


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1 ‘‘(d) ACCESS BY RELEVANT PUBLIC HEALTH AU2 THORITIES.—The Secretary shall collaborate with rep3 resentatives of State, local, and Tribal health depart4 ments, and entities representing such departments to en5 sure data collected under this section is accessible, as ap6 propriate, to State, local, or Tribal health authorities. 

7 Nothing in this section shall be construed to limit the au8 thority to share public health surveillance data with State, 

9 local, or Tribal health authorities. 

10 ‘‘(e) EXEMPTION OF CERTAIN PUBLIC HEALTH

11 DATA FROM DISCLOSURE.—The Secretary, acting 

12 through the Director of the Centers for Disease Control 

13 and Prevention, may exempt from disclosure under section 

14 552(b)(3) of title 5, United States Code, public health 

15 data that are collected by the Centers for Disease Control 

16 and Prevention, if— 

17 ‘‘(1) an individual is identified through such 

18 data; or 

19 ‘‘(2) there is at least a very small risk, as deter20 mined by current scientific practices or statistical 

21 methods, that some combination of the information, 

22 the request, and other available data sources or the 

23 application of technology could be used to deduce 

24 the identity of an individual.’’. 


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1 (e) IMPROVING PUBLIC HEALTH DATA COLLEC2 TION.— 

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

4 Human Services (referred to in this subsection as 

5 the ‘‘Secretary’’) shall award grants, contracts, or 

6 cooperative agreements to eligible entities for pur7 poses of identifying, developing, or disseminating 

8 best practices in the collection of electronic health 

9 information and the use of designated data stand10 ards and implementation specifications to improve 

11 the quality and completeness of data, including de12 mographic data, collected, accessed, or used for pub13 lic health purposes and to address health disparities 

14 and related health outcomes. 

15 (2) ELIGIBLE ENTITIES.—To be eligible to re16 ceive an award under this subsection an entity 

17 shall— 

18 (A) be a health care provider, academic 

19 medical center, community-based organization, 

20 State, local governmental entity, Indian Tribe 

21 or Tribal organization (as such terms are de22 fined in section 4 of the Indian Self Determina23 tion and Education Assistance Act (25 U.S.C. 

24 5304)), urban Indian organization (as defined 

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1 ment Act (25 U.S.C. 1603)), or other appro2 priate public or private nonprofit entity, or a 

3 consortia of any such entities; and 

4 (B) submit an application to the Secretary 

5 at such time, in such manner, and containing 

6 such information as the Secretary may require. 

7 (3) ACTIVITIES.—Entities receiving awards 

8 under this subsection shall use such award to de9 velop and test best practices for training health care 

10 providers to use standards and implementation spec11 ifications that assist in the capture, access, ex12 change, and use of electronic health information, in13 cluding demographic information, disability status, 

14 veteran status, housing status, functional status, 

15 and other data elements. Such activities shall in16 clude, at a minimum— 

17 (A) improving, understanding, and using 

18 data standards and implementation specifica19 tions; 

20 (B) developing or identifying methods to 

21 improve communication with patients in a cul22 turally and linguistically appropriate manner, 

23 including to better capture information related 

24 to demographics of such individuals; 


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1 (C) developing methods for accurately cat2 egorizing and recording patient responses using 

3 available data standards; 

4 (D) educating providers regarding the util5 ity of such information for public health pur6 poses and the importance of accurate collection 

7 and recording of such data; and 

8 (E) other activities, as the Secretary deter9 mines appropriate. 

10 (4) REPORTING.— 

11 (A) REPORTING BY AWARD RECIPIENTS.— 

12 Each recipient of an award under this sub13 section shall submit to the Secretary a report 

14 on the results of best practices identified, devel15 oped, or disseminated through such award. 

16 (B) REPORT TO CONGRESS.—Not later 

17 than 1 year after the completion of the program 

18 under this subsection, the Secretary shall sub19 mit a report to Congress on the success of best 

20 practices developed under such program, oppor21 tunities for further dissemination of such best 

22 practices, and recommendations for improving 

23 the capture, access, exchange, and use of infor24 mation to improve public health and reduce 

25 health disparities. 


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1 (5) NON-DUPLICATION OF EFFORTS.—The Sec2 retary shall ensure that the activities and programs 

3 carried out under this subsection are free of unnec4 essary duplication of effort. 

5 (6) AUTHORIZATION OF APPROPRIATIONS.— 

6 There are authorized to be appropriated 

7 $10,000,000 for each of fiscal years 2023 through 

8 2025 to carry out this subsection. 

9 (f) INFORMATION COLLECTION.—Section 319D(a) of 

10 the Public Health Service Act (42 U.S.C. 247d–4(a)) is 

11 amended by adding the following new paragraph: 

12 ‘‘(5) INFORMATION COLLECTION.—Subchapter 

13 I of chapter 35 of title 44, United States Code, shall 

14 not apply to information collection by the Centers 

15 for Disease Control and Prevention, including the 

16 Agency for Toxic Substances and Disease Registry, 

17 that are part of investigations, research, surveil18 lance, or evaluations undertaken for public health 

19 purposes.’’. 

Æ 


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