Improving DATA in Public Health Act

I 118TH CONGRESS 1ST SESSION H. R. 3791 To amend the Public Health Service Act with respect to public health data accessibility, and for other purposes. IN THE HOUSE OF REPRESENTATIVES JUNE 1, 2023 Ms. UNDERWOOD (for herself, Mr. BERA, Ms. CASTOR of Florida, and Ms. DELAURO) introduced the following bill; which was referred to the Com- mittee on Energy and Commerce A BILL To amend the Public Health Service Act with respect to public health data accessibility, and for other purposes. Be it enacted by the Senate and House of Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘Improving Data Acces- 4 sibility Through Advancements in Public Health Act’’ or 5 the ‘‘Improving DATA in Public Health Act’’. 6 SEC. 2. SUPPORTING PUBLIC HEALTH DATA AVAILABILITY 7 AND ACCESS. 8 (a) DESIGNATION OF PUBLIC HEALTH DATA STAND- 9 ARDS.—Section 2823(a)(2) of the Public Health Service 10 VerDate Sep 11 2014 03:53 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H3791.IH H3791 kjohnson on DSK79L0C42PROD with BILLS 2 •HR 3791 IH Act (42 U.S.C. 300hh–33(a)(2)) is amended by adding at 1 the end the following: 2 ‘‘(D) SELECTION OF DATA AND TECH- 3 NOLOGY STANDARDS.—The standards des- 4 ignated as described in subparagraph (A) may 5 include standards to improve— 6 ‘‘(i) the exchange of electronic health 7 information for— 8 ‘‘(I) electronic case reporting; 9 ‘‘(II) syndromic surveillance; 10 ‘‘(III) reporting of vital statistics; 11 and 12 ‘‘(IV) reporting test orders and 13 results electronically, including from 14 laboratories; 15 ‘‘(ii) automated electronic reporting to 16 relevant public health data systems of the 17 Centers for Disease Control and Preven- 18 tion; and 19 ‘‘(iii) such other uses as the Secretary 20 determines appropriate. 21 ‘‘(E) CONSIDERATIONS.—Standards des- 22 ignated under this paragraph shall include 23 standards and implementation specifications 24 necessary to ensure the appropriate capture, ex- 25 VerDate Sep 11 2014 03:53 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H3791.IH H3791 kjohnson on DSK79L0C42PROD with BILLS 3 •HR 3791 IH change, access, and use of information regard- 1 ing race, ethnicity, sex (including sexual ori- 2 entation and gender identity), disability status, 3 veteran status, housing status, age, functional 4 status, and other elements.’’. 5 (b) IMPROVING INFORMATION SHARING AND AVAIL- 6 ABILITY OF PUBLIC HEALTH DATA.—Section 310B of the 7 Public Health Service Act (42 U.S.C. 242u) is amended 8 to read as follows: 9 ‘‘SEC. 310B. IMPROVING INFORMATION SHARING AND 10 AVAILABILITY OF PUBLIC HEALTH DATA. 11 ‘‘(a) IN GENERAL.—The Secretary acting through 12 the Director of the Centers for Disease Control and Pre- 13 vention (in this section referred to as the ‘Secretary’) may 14 require the reporting of public health and health care data 15 and information to the Centers for Disease Control and 16 Prevention by— 17 ‘‘(1) health care providers and facilities, includ- 18 ing pharmacies; 19 ‘‘(2) public health, clinical, and other labora- 20 tories and diagnostic testing entities; 21 ‘‘(3) State, local, and Tribal health depart- 22 ments; and 23 ‘‘(4) other entities, as determined appropriate 24 by the Secretary. 25 VerDate Sep 11 2014 03:53 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H3791.IH H3791 kjohnson on DSK79L0C42PROD with BILLS 4 •HR 3791 IH ‘‘(b) CONTENT, FORM, MANNER, AND FRE- 1 QUENCY.— 2 ‘‘(1) COLLABORATION.—The Secretary shall 3 collaborate with representatives of State, local, and 4 Tribal health departments and other entities on de- 5 termining the content, form, manner, and frequency 6 of the reporting of public health and health care 7 data and information required pursuant to sub- 8 section (a). 9 ‘‘(2) SIMULTANEOUS REPORTING.—In deter- 10 mining the content, form, manner, and frequency of 11 the reporting of public health and health care data 12 and information pursuant to subsection (a), where a 13 disease, condition, or related event is reportable 14 under applicable State or local law, the Secretary 15 shall require the data and information to be reported 16 first or simultaneously to the appropriate State or 17 local jurisdiction. 18 ‘‘(3) ALIGNMENT WITH STANDARDS AND IM- 19 PLEMENTATION SPECIFICATIONS.—The content, 20 form, manner, and frequency requirements required 21 pursuant to this section shall align with the stand- 22 ards and implementation specifications adopted by 23 the Secretary under section 3004, where applicable. 24 VerDate Sep 11 2014 03:53 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H3791.IH H3791 kjohnson on DSK79L0C42PROD with BILLS 5 •HR 3791 IH ‘‘(4) REASONABLE EFFORTS TO LIMIT REPORT- 1 ING.—The Secretary shall make reasonable efforts 2 to limit the public health and health care data and 3 information required to be reported under this sec- 4 tion to the minimum necessary to accomplish the in- 5 tended public health purpose. 6 ‘‘(5) IMPLEMENTATION AND REGULATIONS.— 7 The Secretary— 8 ‘‘(A) may promulgate by regulation the 9 content, form, manner, and frequency in which 10 public health and health care data and informa- 11 tion is required to be reported under this sec- 12 tion; and 13 ‘‘(B) in the event of a public health emer- 14 gency declared under section 319, or where the 15 Secretary determines there is a significant po- 16 tential for such an emergency to exist, may 17 issue such requirements— 18 ‘‘(i) by guidance in accordance with 19 this section; and 20 ‘‘(ii) without regard to the procedures 21 otherwise required by section 553 of title 22 5, United States Code. 23 VerDate Sep 11 2014 03:53 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H3791.IH H3791 kjohnson on DSK79L0C42PROD with BILLS 6 •HR 3791 IH ‘‘(c) ENSURING THAT DATA IS ACCESSIBLE IN A 1 TIMELY MANNER TO STATE, LOCAL, AND TRIBAL 2 HEALTH AUTHORITIES.— 3 ‘‘(1) COLLABORATION.—The Secretary shall 4 collaborate with representatives of State, local, and 5 Tribal health departments, and entities representing 6 such departments, to ensure that data and informa- 7 tion that is collected by the Centers for Disease Con- 8 trol and Prevention pursuant to this section are ac- 9 cessible, as appropriate, in a timely manner, to 10 State, local, and Tribal health authorities. 11 ‘‘(2) RULES OF CONSTRUCTION.—Nothing in 12 this section shall be construed— 13 ‘‘(A) to prevent any Federal agency, State, 14 local, or Tribal health department, or other en- 15 tity from collecting data or information under 16 other applicable law; or 17 ‘‘(B) to limit the authority of the Centers 18 for Disease Control and Prevention to share 19 public health surveillance data with State, local, 20 or Tribal health authorities. 21 ‘‘(3) REASONABLE EFFORTS TO REDUCE RE- 22 PORTING BURDENS AND POTENTIAL DUPLICA- 23 TION.—The Secretary shall make reasonable efforts 24 to collaborate with representatives of Federal agen- 25 VerDate Sep 11 2014 03:53 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H3791.IH H3791 kjohnson on DSK79L0C42PROD with BILLS 7 •HR 3791 IH cies and State, local, and Tribal health departments 1 to reduce reporting burdens and potential duplica- 2 tion of reporting requirements. Such efforts may in- 3 clude ensuring simultaneous sharing of data and in- 4 formation described in subsection (b) with State, 5 local, and Tribal public health authorities. 6 ‘‘(d) CONFIDENTIALITY AND PROTECTION OF 7 DATA.—Any identifiable, sensitive information reported to 8 the Centers for Disease Control and Prevention pursuant 9 to this section shall not be further disclosed or provided 10 to any other individual or party, including any party in- 11 volved in civil, criminal, or administrative litigation, ex- 12 cept— 13 ‘‘(1) as necessary for public health purposes, in- 14 cluding with relevant Federal, State, local, or tribal 15 public health authorities; 16 ‘‘(2) as required under section 552a(d)(1) of 17 title 5, United States Code; 18 ‘‘(3) as required by applicable Federal laws, ex- 19 cluding instances of disclosure in any Federal, State, 20 or local civil, criminal, administrative, legislative, or 21 other proceeding; or 22 ‘‘(4) with the consent of each individual to 23 whom the information pertains. 24 VerDate Sep 11 2014 03:53 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H3791.IH H3791 kjohnson on DSK79L0C42PROD with BILLS 8 •HR 3791 IH ‘‘(e) EXEMPTION OF CERTAIN PUBLIC HEALTH 1 DATA FROM DISCLOSURE.—The Secretary may exempt 2 from disclosure under section 552(b)(3) of title 5, United 3 States Code, public health and health care data and infor- 4 mation collected by the Centers for Disease Control and 5 Prevention pursuant to this section or any other authority 6 under which the Centers collects public health or health 7 care data and information if— 8 ‘‘(1) an individual is identified through such 9 data or information; or 10 ‘‘(2) there is at least a very small risk, as deter- 11 mined by current scientific practices or statistical 12 methods, that some combination of the data or in- 13 formation, the request for disclosure under such sec- 14 tion 552(b)(3), and other available data sources or 15 the application of technology could be used to de- 16 duce the identity of the individuals to which such 17 data or information pertains.’’. 18 (c) PUBLIC HEALTH INFORMATION SHARING AND 19 AVAILABILITY ADVISORY COMMITTEE.—Part A of title III 20 of the Public Health Service Act (42 U.S.C. 241 et seq.) 21 is amended by adding at the end the following: 22 VerDate Sep 11 2014 03:53 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H3791.IH H3791 kjohnson on DSK79L0C42PROD with BILLS 9 •HR 3791 IH ‘‘SEC. 310C. PUBLIC HEALTH INFORMATION SHARING AND 1 AVAILABILITY ADVISORY COMMITTEE. 2 ‘‘(a) ESTABLISHMENT.—The Secretary, acting 3 through the Director of the Centers for Disease Control 4 and Prevention, shall establish an advisory committee, to 5 be known as the Public Health Information Sharing and 6 Availability Advisory Committee, to advise, and make rec- 7 ommendations to, the Director with respect to the imple- 8 mentation of public health and health care data and infor- 9 mation reporting and sharing under section 310B. 10 ‘‘(b) MEMBERSHIP.—The membership of the advisory 11 committee established pursuant to this section shall in- 12 clude— 13 ‘‘(1) individuals with subject matter expertise 14 or experience in the following areas of public health 15 and health care data and information, including— 16 ‘‘(A) State, territorial, local, and Tribal 17 health department data systems or practices; 18 and 19 ‘‘(B) health care data; 20 ‘‘(2) ex officio members, including from relevant 21 Federal agencies such as the Office of the National 22 Coordinator for Health Information Technology, the 23 Centers for Medicare & Medicaid Services, the Cen- 24 ters for Disease Control and Prevention, and the Of- 25 fice of the Assistant Secretary for Health; 26 VerDate Sep 11 2014 03:53 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H3791.IH H3791 kjohnson on DSK79L0C42PROD with BILLS 10 •HR 3791 IH ‘‘(3) representatives of national organizations, 1 including the Council of State and Territorial Epi- 2 demiologists, the Association of Public Health Lab- 3 oratories, the Association of State and Territorial 4 Health Officials, the National Association of County 5 and City Health Officials, and the Big Cities Health 6 Coalition; and 7 ‘‘(4) such additional members as the Secretary 8 determines appropriate. 9 ‘‘(c) FACA APPLICABILITY.—The advisory com- 10 mittee established pursuant to this section is deemed to 11 be an advisory committee subject to the Federal Advisory 12 Committee Act.’’. 13 (d) IMPROVING PUBLIC HEALTH DATA COLLEC- 14 TION.— 15 (1) IN GENERAL.—The Secretary of Health and 16 Human Services (referred to in this subsection as 17 the ‘‘Secretary’’) shall award grants, contracts, or 18 cooperative agreements to eligible entities for pur- 19 poses of identifying, developing, or disseminating 20 best practices in the collection of electronic health 21 information and the use of designated data stand- 22 ards and implementation specifications— 23 (A) to improve the quality and complete- 24 ness of data, including demographic data, col- 25 VerDate Sep 11 2014 03:53 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H3791.IH H3791 kjohnson on DSK79L0C42PROD with BILLS 11 •HR 3791 IH lected, accessed, or used for public health pur- 1 poses; and 2 (B) to address health disparities and re- 3 lated health outcomes. 4 (2) ELIGIBLE ENTITIES.—To be eligible to re- 5 ceive an award under this subsection an entity 6 shall— 7 (A) be a health care provider, academic 8 medical center, community-based organization, 9 State, local governmental entity, Indian Tribe 10 or Tribal organization (as such terms are de- 11 fined in section 4 of the Indian Self Determina- 12 tion and Education Assistance Act (25 U.S.C. 13 5304)), Urban Indian organization (as defined 14 in section 4 of the Indian Health Care Improve- 15 ment Act (25 U.S.C. 1603)), or other appro- 16 priate public or private nonprofit entity, or a 17 consortia of any such entities; and 18 (B) submit an application to the Secretary 19 at such time, in such manner, and containing 20 such information as the Secretary may require. 21 (3) ACTIVITIES.—Entities receiving awards 22 under this subsection shall use such award to de- 23 velop and test best practices for training health care 24 providers to use standards and implementation spec- 25 VerDate Sep 11 2014 03:53 Jun 27, 2023 Jkt 039200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\H3791.IH H3791 kjohnson on DSK79L0C42PROD with BILLS 12 •HR 3791 IH ifications that assist in the capture, access, ex- 1 change, and use of electronic health information, in- 2 cluding demographic information, disability status, 3 veteran status, housing status, functional status, 4 and other data elements. Such activities shall, at a 5 minimum, include— 6 (A) improving, understanding, and using 7 data standards and implementation specifica- 8 tions; 9 (B) developing or identifying methods to 10 improve communication with patients in a cul- 11 turally and linguistically appropriate manner, 12 including to better capture information related 13 to demographics of such individuals; 14 (C) developing methods for accurately cat- 15 egorizing and recording patient responses using 16 available data standards; 17 (D) educating providers regarding the util- 18 ity of such information for public health pur- 19 poses and [Text truncated for display. Full text available on Congress.gov.]