Health STATISTICS Act of 2020

I 116TH CONGRESS 2D SESSION H. R. 8080 To amend the Public Health Service Act to encourage the development of certain public health data standards, authorize epidemiological surveil- lance grants, and authorize a data linkage demonstration project, and for other purposes. IN THE HOUSE OF REPRESENTATIVES AUGUST 21, 2020 Mr. PETERS (for himself, Ms. ESHOO, Mrs. MCBATH, and Mr. FITZPATRICK) introduced the following bill; which was referred to the Committee on En- ergy and Commerce A BILL To amend the Public Health Service Act to encourage the development of certain public health data standards, au- thorize epidemiological surveillance grants, and authorize a data linkage demonstration project, and for other pur- poses. 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 ‘‘Health Standards To 4 Advance Transparency, Integrity, Science, Technology In- 5 frastructure, and Confidential Statistics Act of 2020’’ or 6 the ‘‘Health STATISTICS Act of 2020’’. 7 VerDate Sep 11 2014 21:02 Sep 08, 2020 Jkt 099200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H8080.IH H8080 2 •HR 8080 IH SEC. 2. IMPROVING PUBLIC HEALTH DATA. 1 Title XXXI of the Public Health Service Act (42 2 U.S.C. 300kk) is amended— 3 (1) by inserting before section 3101 the fol- 4 lowing subtitle designation and heading: 5 ‘‘Subtitle A—In General’’; 6 and 7 (2) by adding at the end the following new sub- 8 title: 9 ‘‘Subtitle B—Public Health 10 Common Data Standards 11 ‘‘SEC. 3111. TREATMENT OF PUBLIC HEALTH DATA. 12 ‘‘(a) STANDARDIZED REPORTING.— 13 ‘‘(1) IN GENERAL.—The Secretary, acting 14 through the Director of the Centers for Disease 15 Control and Prevention, shall— 16 ‘‘(A) adopt and update as necessary uni- 17 form standards for State and local health de- 18 partments to report data to the Centers; and 19 ‘‘(B) in adopting and updating standards 20 under this subsection, give deference to— 21 ‘‘(i) corresponding standards devel- 22 oped by standards development organiza- 23 tions and voluntary consensus-based stand- 24 ards bodies; and 25 VerDate Sep 11 2014 22:55 Sep 04, 2020 Jkt 099200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H8080.IH H8080 3 •HR 8080 IH ‘‘(ii) the recommendations of the 1 working group established under para- 2 graph (3). 3 ‘‘(2) REQUIREMENTS.—The standards under 4 paragraph (1) shall— 5 ‘‘(A) be consistent with— 6 ‘‘(i) standards for the interoperability 7 of health information technology under 8 subtitle A; 9 ‘‘(ii) Office of Management and Budg- 10 et Circular A–119 (or any successor there- 11 to); 12 ‘‘(iii) Office of Management and 13 Budget standards for race and ethnicity 14 and other relevant measures; and 15 ‘‘(B) provide for the use of interoperable 16 systems, consistent with the application pro- 17 gramming interface standards and associated 18 implementation specifications under section 19 170.215 of title 45 (or any successor regula- 20 tions). 21 ‘‘(3) WORKING GROUP.— 22 ‘‘(A) ESTABLISHMENT.—The Secretary 23 shall establish a permanent technical working 24 group (in this paragraph referred to as the 25 VerDate Sep 11 2014 22:55 Sep 04, 2020 Jkt 099200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H8080.IH H8080 4 •HR 8080 IH ‘working group’) to make recommendations on 1 an ongoing basis and as needed to establish 2 more comprehensive common standards across 3 appropriate health care, public health, environ- 4 mental, and public assistance data systems. 5 ‘‘(B) DUTIES.—In making the recommen- 6 dations required by subparagraph (A), the 7 working group shall— 8 ‘‘(i) coordinate, and consult with the 9 Interagency Council on Statistical Policy 10 established under section 3504 of title 44, 11 United States Code, and any other relevant 12 interagency or intra-agency committee; 13 ‘‘(ii) include recommendations for— 14 ‘‘(I) efficiencies to reduce redun- 15 dancy and the public reporting burden 16 in Federal health data reporting re- 17 quirements and data collections; and 18 ‘‘(II) methods to facilitate evi- 19 dence-building through standardized 20 local and State reporting and cross- 21 agency, linkable data sharing between 22 and among local, State, and Federal 23 agencies to collect, acquire, and com- 24 pile complete statistics; and 25 VerDate Sep 11 2014 22:55 Sep 04, 2020 Jkt 099200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H8080.IH H8080 5 •HR 8080 IH ‘‘(iii) build on existing efforts of pub- 1 lic multistakeholder initiatives seeking to 2 standardize key data elements necessary 3 for documenting clinical and other activi- 4 ties related to the social determinants of 5 health in order to improve interoperability, 6 exchange, and use of social determinants 7 of health data across the health and 8 human services sectors. 9 ‘‘(C) ADDITIONAL CONSULTATION.—The 10 working group may consult with outside ex- 11 perts, including State, local, Tribal, and terri- 12 torial public health officials, public health re- 13 searchers, and health care providers rep- 14 resenting communities most affected by health 15 disparities. 16 ‘‘(D) TIMING.—Not later than 6 months 17 after the date of enactment of this subtitle, the 18 working group shall provide initial recommenda- 19 tions under subsection (a) to the Secretary and 20 the Director of the Centers for Disease Control 21 and Prevention. 22 ‘‘(E) COMPOSITION.— 23 VerDate Sep 11 2014 22:55 Sep 04, 2020 Jkt 099200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H8080.IH H8080 6 •HR 8080 IH ‘‘(i) IN GENERAL.—The working 1 group shall, at a minimum, include rep- 2 resentation from— 3 ‘‘(I) all relevant Department of 4 Health and Human Services units, in- 5 cluding— 6 ‘‘(aa) the National Center 7 for Health Statistics; 8 ‘‘(bb) the Centers for Dis- 9 ease Control and Prevention; 10 ‘‘(cc) the Office of the Chief 11 Technology Officer in the Office 12 of the Secretary; 13 ‘‘(dd) the Office of the Na- 14 tional Coordinator for Health In- 15 formation Technology; and 16 ‘‘(ee) the Health and 17 Human Services Data Council; 18 ‘‘(II) the Office of Information 19 and Regulatory Affairs of the Office 20 of Management and Budget; 21 ‘‘(III) the National Institute of 22 Standards and Technology; 23 ‘‘(IV) the Veterans Health Ad- 24 ministration; 25 VerDate Sep 11 2014 22:55 Sep 04, 2020 Jkt 099200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H8080.IH H8080 7 •HR 8080 IH ‘‘(V) the Military Health System; 1 and 2 ‘‘(VI) the Indian Health Service. 3 ‘‘(ii) CHAIR.—The chair of the work- 4 ing group shall be the Director of the Na- 5 tional Center for Health Statistics (or the 6 Director’s designee). 7 ‘‘(b) INCREASING EFFICIENCY AND ADVANCING EVI- 8 DENCE BUILDING.—Consistent with the standards in ef- 9 fect under subsection (a), the Chief Statistician of the 10 United States in the Office of Management and Budget, 11 in accordance with section 3504(e) of title 44, United 12 States Code, shall issue and update on an ongoing basis 13 as needed, directives guiding Federal health data informa- 14 tion collection to reduce public reporting burden, ensure 15 information quality, improve use of determinants of health 16 data, and enhance access to health data for evidence-build- 17 ing activities. 18 ‘‘(c) COVID–19 HIGH-PRIORITY STANDARDS.—Not 19 later than 30 days after the date of enactment of this sub- 20 title, the Secretary, acting through the Director of the 21 Centers for Disease Control and Prevention, and in con- 22 sultation with the Director of the National Institutes of 23 Health, shall— 24 VerDate Sep 11 2014 22:55 Sep 04, 2020 Jkt 099200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H8080.IH H8080 8 •HR 8080 IH ‘‘(1) establish standards under subsection (a) 1 with respect to COVID–19, including for therapeutic 2 interventions, treatment settings, and associated out- 3 comes; and 4 ‘‘(2) in carrying out paragraph (1), adopt or 5 build upon existing standards. 6 ‘‘(d) SHARING DATA RELATED TO COVID–19.— 7 Subject to applicable law on the privacy and confiden- 8 tiality of individually identifiable information, the Sec- 9 retary shall— 10 ‘‘(1) share up-to-date data related to COVID– 11 19 data collected by the Department of Health and 12 Human Services with— 13 ‘‘(A) the Centers for Disease Control and 14 Prevention; and 15 ‘‘(B) Federal, State, and local public 16 health agencies outside of the Department of 17 Health and Human Services; and 18 ‘‘(2) make such data (including metadata as de- 19 fined in section 3502 of title 44, United States 20 Code) publicly available using standardized, ma- 21 chine-readable formats— 22 ‘‘(A) on the website of the Department of 23 Health and Human Services; and 24 VerDate Sep 11 2014 22:55 Sep 04, 2020 Jkt 099200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H8080.IH H8080 9 •HR 8080 IH ‘‘(B) in the Federal data catalogue main- 1 tained under section 3511(c) of title 44, United 2 States Code. 3 ‘‘SEC. 3112. EPIDEMIOLOGICAL SURVEILLANCE GRANTS. 4 ‘‘(a) GRANT AUTHORITY.—The Secretary, in con- 5 sultation with the Director of the National Center for 6 Health Statistics, may award grants or cooperative agree- 7 ments to public health reporting entities— 8 ‘‘(1) to establish protocols and acquire tech- 9 nologies to implement the standards under section 10 3111 for reporting, directly or indirectly, to the Fed- 11 eral Government, including by— 12 ‘‘(A) supporting expansion and moderniza- 13 tion of electronic case reporting, laboratory re- 14 porting, and mortality reporting; 15 ‘‘(B) making data sharing with the Na- 16 tional Center for Health Statistics bidirectional; 17 ‘‘(C) improving interoperability standards 18 and implementation specifications for industry 19 use to fulfill specific clinical health information 20 technology interoperability needs; 21 ‘‘(D) developing and implementing protec- 22 tions required by subsection (b); and 23 ‘‘(E) conducting real-world testing of data 24 sharing to ensure viability, scalability, and 25 VerDate Sep 11 2014 22:55 Sep 04, 2020 Jkt 099200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H8080.IH H8080 10 •HR 8080 IH adaptability of data collection and reporting ac- 1 tivities; and 2 ‘‘(2) to carry out such reporting using such pro- 3 tocols and technologies. 4 ‘‘(b) ADOPTION OF STANDARDS AND DATA PROTEC- 5 TIONS.—The Secretary may not award a grant or coopera- 6 tive agreement under subsection (a) unless the applicant 7 develops an implementation plan to develop and implement 8 policies, practices, procedures, and controls related to— 9 ‘‘(1) improving data quality and reporting time- 10 liness; 11 ‘‘(2) data security, in accordance with the most 12 recent versions of the Cybersecurity Framework and 13 Privacy Framework (or successor frameworks) of the 14 National Institute of Standards and Technology; and 15 ‘‘(3) confidentiality and privacy of any informa- 16 tion that pertains to an individual and from which, 17 either alone or in combination with other reasonably 18 available information, the individual’s identity can be 19 determined, including policies, practices, procedures, 20 and controls for— 21 ‘‘(A) minimizing collection, processing, 22 maintenance, retention, and disclosure of such 23 information to what is necessary, proportionate, 24 and limited for a good faith public health pur- 25 VerDate Sep 11 2014 22:55 Sep 04, 2020 Jkt 099200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H8080.IH H8080 11 •HR 8080 IH pose that is clearly described and limited in an 1 agreement between the Federal Government 2 and the recipient; 3 ‘‘(B) prohibiting disclosure of such infor- 4 mation to persons, including government enti- 5 ties, absent legal safeguards included in Federal 6 or State laws or regulations, for protecting the 7 security and privacy of such information; and 8 ‘‘(C) making the data available to the Na- 9 tional Center for Health Statistics for statistical 10 purposes under subchapter III of chapter 35 of 11 title 44, United States Code. 12 ‘‘(c) COVID–19 REPORTING.—The Secretary may 13 not award a grant or cooperative agreement under sub- 14 section (a) unless the applicant agrees— 15 ‘‘(1) to use the grant for activities under sub- 16 section (a) with respect to COVID–19, including 17 with respect to— 18 ‘‘(A) testing results data; 19 ‘‘(B) testing results turnaround time; 20 ‘‘(C) hospitalization and intensive care unit 21 data; 22 ‘‘(D) new infections among health care 23 workers; 24 VerDate Sep 11 2014 22:55 Sep 04, 2020 Jkt 099200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\H8080.IH H8080 12 •HR 8080 IH ‘‘(E) new cases among quarantined con- 1 tacts; and 2 ‘‘(F) long-term care facilities, prisons, and 3 other congregate settings; and 4 ‘‘(2) in carrying out such activities, to 5 disaggregate data by age, sex, race, ethnicity, and 6 ZIP Code, as appropriate and to the extent possible. 7 ‘‘(d) APPLICATION.—A public health reporting entity 8 applying for a grant or cooperative agreement under this 9 section shall submit an application to the Secretary at 10 such time and in such manner as the Secretary may re- 11 quire. 12 ‘‘(e) DEFINITION.—In this section, the term ‘public 13 health reporting entity’ means any entity that reports data 14 to the Centers for Disease Control and Prevention or an- 15 other public health authority, including a State or local 16 public health department, a public health laboratory, and 17 a health care provider. 18 ‘‘SEC. 3113. EVIDENCE-BUILDING DEMONSTRATION PRO- 19 GRAM. 20 ‘‘(a) IN GENERAL.—The Secretary acting through 21 the Director of the National Center for Health Statistics 22 (in this section referred to as the ‘Secretary’) shall expand 23 the data linkage program of the Department of Health 24 and Human Services consisting of Federal statistical and 25 VerDate Sep 11 2014 22:55 Sep 04, 2020 Jkt 099200 PO 00000 Frm 00012 Fmt 6652 Sfmt 6201 E:\BILLS\H8080.IH H8080 13 •HR 8080 IH programmatic datasets from specified Federal entities, as 1 authorized by subchapter III of chapter 35 of title 44, 2 United States Code, for the purpose of facilitating statis- 3 tical public health research on trends and patterns across 4 specifically defined, statistically relevant populations, with 5 a particular focus on linking social determinants of health 6 data, including with respect to— 7 ‘‘(1) food insecurity; 8 ‘‘(2) housing instability; 9 ‘‘(3) transportation access; 10 ‘‘(4) safety; 11 ‘‘(5) social connection and isolation; 12 ‘‘(6) financial resource strain; and 13 ‘‘(7) stress. 14 ‘‘(b) ACTIVITIES.—The activities of the demonstra- 15 tion program under this section shall include: 16 ‘‘(1) Assessing the availability of identified and 17 deidentified data sets held b [Text truncated for display. 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