Health STATISTICS Act of 2021

I 117TH CONGRESS 1ST SESSION H. R. 831 To amend the Public Health Service Act to encourage the rapid 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 FEBRUARY 4, 2021 Mr. PETERS (for himself, Ms. ESHOO, Mr. FITZPATRICK, Mrs. MCBATH, and Ms. CRAIG) introduced the following bill; which was referred to the Com- mittee on Energy and Commerce A BILL To amend the Public Health Service Act to encourage the rapid development of certain public health data stand- ards, authorize epidemiological surveillance grants, and authorize a data linkage demonstration project, 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 ‘‘Health Standards To 4 Advance Transparency, Integrity, Science, Technology In- 5 frastructure, and Confidential Statistics Act of 2021’’ or 6 the ‘‘Health STATISTICS Act of 2021’’. 7 VerDate Sep 11 2014 22:34 Mar 03, 2021 Jkt 019200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H831.IH H831 pbinns on DSKJLVW7X2PROD with BILLS 2 •HR 831 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 22:34 Mar 03, 2021 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H831.IH H831 pbinns on DSKJLVW7X2PROD with BILLS 3 •HR 831 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 ‘‘(iv) the data and technology stand- 16 ards designated under section 2823(a)(2); 17 and 18 ‘‘(B) provide for the use of interoperable 19 systems, consistent with the application pro- 20 gramming interface standards and associated 21 implementation specifications under section 22 170.215 of title 45 (or any successor regula- 23 tions). 24 ‘‘(3) WORKING GROUP.— 25 VerDate Sep 11 2014 22:34 Mar 03, 2021 Jkt 019200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H831.IH H831 pbinns on DSKJLVW7X2PROD with BILLS 4 •HR 831 IH ‘‘(A) ESTABLISHMENT.—The Secretary 1 shall establish a technical working group (in 2 this paragraph referred to as the ‘working 3 group’) to make recommendations on an ongo- 4 ing basis and as needed to establish more com- 5 prehensive common standards across appro- 6 priate health care, public health, environmental, 7 and public assistance data systems. 8 ‘‘(B) DUTIES.—In making the rec- 9 ommendations required by subparagraph (A), 10 the working group shall— 11 ‘‘(i) coordinate, and consult with the 12 Interagency Council on Statistical Policy 13 established under section 3504 of title 44, 14 United States Code, and any other relevant 15 interagency or intra-agency committee; 16 ‘‘(ii) include recommendations for— 17 ‘‘(I) efficiencies to reduce redun- 18 dancy and the public reporting burden 19 in Federal health data reporting re- 20 quirements and data collections; and 21 ‘‘(II) methods to facilitate evi- 22 dence-building through standardized 23 local and State reporting and cross- 24 agency, linkable data sharing between 25 VerDate Sep 11 2014 22:34 Mar 03, 2021 Jkt 019200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H831.IH H831 pbinns on DSKJLVW7X2PROD with BILLS 5 •HR 831 IH and among local, State, and Federal 1 agencies to collect, acquire, and com- 2 pile complete statistics; and 3 ‘‘(iii) build on existing efforts of pub- 4 lic multistakeholder initiatives seeking to 5 standardize key data elements necessary 6 for documenting clinical and other activi- 7 ties related to the social determinants of 8 health in order to improve interoperability, 9 exchange, and use of social determinants 10 of health data across the health and 11 human services sectors. 12 ‘‘(C) ADDITIONAL CONSULTATION.—The 13 working group may consult with outside ex- 14 perts, including State, local, Tribal, and terri- 15 torial public health officials, public health re- 16 searchers, and health care providers rep- 17 resenting communities most affected by health 18 disparities. 19 ‘‘(D) TIMING.—Not later than 6 months 20 after the date of enactment of this subtitle, the 21 working group shall provide initial recommenda- 22 tions under subsection (a) to the Secretary and 23 the Director of the Centers for Disease Control 24 and Prevention. 25 VerDate Sep 11 2014 22:34 Mar 03, 2021 Jkt 019200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H831.IH H831 pbinns on DSKJLVW7X2PROD with BILLS 6 •HR 831 IH ‘‘(E) COMPOSITION.— 1 ‘‘(i) IN GENERAL.—The working 2 group shall, at a minimum, include rep- 3 resentation from— 4 ‘‘(I) all relevant Department of 5 Health and Human Services units, in- 6 cluding— 7 ‘‘(aa) the National Center 8 for Health Statistics; 9 ‘‘(bb) the Centers for Dis- 10 ease Control and Prevention; 11 ‘‘(cc) the Office of the Chief 12 Technology Officer in the Office 13 of the Secretary; 14 ‘‘(dd) the Office of the Na- 15 tional Coordinator for Health In- 16 formation Technology; and 17 ‘‘(ee) the Health and 18 Human Services Data Council; 19 ‘‘(II) the Office of Information 20 and Regulatory Affairs of the Office 21 of Management and Budget; 22 ‘‘(III) the National Institute of 23 Standards and Technology; 24 VerDate Sep 11 2014 22:34 Mar 03, 2021 Jkt 019200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H831.IH H831 pbinns on DSKJLVW7X2PROD with BILLS 7 •HR 831 IH ‘‘(IV) the Veterans Health Ad- 1 ministration; 2 ‘‘(V) the Military Health System; 3 and 4 ‘‘(VI) the Indian Health Service. 5 ‘‘(ii) CHAIR.—The chair of the work- 6 ing group shall be the Director of the Na- 7 tional Center for Health Statistics (or the 8 Director’s designee). 9 ‘‘(b) INCREASING EFFICIENCY AND ADVANCING EVI- 10 DENCE BUILDING.—Consistent with the standards in ef- 11 fect under subsection (a), the Chief Statistician of the 12 United States in the Office of Management and Budget, 13 in accordance with section 3504(e) of title 44, United 14 States Code, shall issue and update on an ongoing basis 15 as needed, directives guiding Federal health data informa- 16 tion collection to reduce public reporting burden, ensure 17 information quality, improve use of determinants of health 18 data, and enhance access to health data for evidence-build- 19 ing activities. 20 ‘‘(c) COVID–19 HIGH-PRIORITY STANDARDS.—Not 21 later than 30 days after the date of enactment of this sub- 22 title, the Secretary, acting through the Director of the 23 Centers for Disease Control and Prevention, and in con- 24 VerDate Sep 11 2014 22:34 Mar 03, 2021 Jkt 019200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H831.IH H831 pbinns on DSKJLVW7X2PROD with BILLS 8 •HR 831 IH sultation with the Director of the National Institutes of 1 Health, shall— 2 ‘‘(1) establish standards under subsection (a) 3 with respect to COVID–19, including for genomic 4 epidemiology, modeling outbreak preparedness and 5 response, therapeutic interventions, treatment set- 6 tings, and associated outcomes; and 7 ‘‘(2) in carrying out paragraph (1), adopt or 8 build upon existing standards. 9 ‘‘(d) SHARING DATA RELATED TO COVID–19.— 10 Subject to applicable law on the privacy and confiden- 11 tiality of individually identifiable information, the Sec- 12 retary shall— 13 ‘‘(1) share real-time data related to COVID–19 14 data collected by the Department of Health and 15 Human Services with— 16 ‘‘(A) the Centers for Disease Control and 17 Prevention; and 18 ‘‘(B) Federal, State, and local public 19 health agencies outside of the Department of 20 Health and Human Services; and 21 ‘‘(2) make such data (including metadata as de- 22 fined in section 3502 of title 44, United States 23 Code) publicly available using standardized, ma- 24 chine-readable formats— 25 VerDate Sep 11 2014 22:34 Mar 03, 2021 Jkt 019200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H831.IH H831 pbinns on DSKJLVW7X2PROD with BILLS 9 •HR 831 IH ‘‘(A) on the website of the Department of 1 Health and Human Services; and 2 ‘‘(B) in the Federal data catalogue main- 3 tained under section 3511(c) of title 44, United 4 States Code. 5 ‘‘SEC. 3112. EPIDEMIOLOGICAL SURVEILLANCE GRANTS. 6 ‘‘(a) GRANT AUTHORITY.—The Secretary, in con- 7 sultation with the Director of the National Center for 8 Health Statistics, may award grants or cooperative agree- 9 ments to public health reporting entities— 10 ‘‘(1) to establish protocols and acquire tech- 11 nologies to implement the standards under section 12 3111 for reporting, directly or indirectly, to the Fed- 13 eral Government, including by— 14 ‘‘(A) supporting expansion and moderniza- 15 tion of electronic case reporting, laboratory re- 16 porting, and mortality reporting with an em- 17 phasis on modernizing and linking, where ap- 18 propriate, modularized medical examiner and 19 coroner case management systems, electronic 20 death registration systems, electronic health 21 records, and supporting laboratory systems to 22 improve data timeliness and quality; 23 ‘‘(B) making data sharing with the Na- 24 tional Center for Health Statistics bidirectional, 25 VerDate Sep 11 2014 22:34 Mar 03, 2021 Jkt 019200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H831.IH H831 pbinns on DSKJLVW7X2PROD with BILLS 10 •HR 831 IH such that the data received by the National 1 Center for Health Statistics is provided quickly 2 back to State and local offices and to Federal 3 partners and in a form that is quickly under- 4 standable and actionable; 5 ‘‘(C) supporting survey activities to more 6 broadly measure health disparities at the na- 7 tional, State, and local levels; 8 ‘‘(D) improving interoperability standards 9 and implementation specifications for industry 10 use to fulfill specific clinical health information 11 technology interoperability needs; 12 ‘‘(E) developing and implementing protec- 13 tions required by subsection (b); and 14 ‘‘(F) conducting real-world testing of data 15 important for forecasting to ensure viability, 16 scalability, and adaptability of data collection 17 and reporting activities; and 18 ‘‘(2) to carry out such reporting using such pro- 19 tocols and technologies. 20 ‘‘(b) ADOPTION OF STANDARDS AND DATA PROTEC- 21 TIONS.—The Secretary may not award a grant or coopera- 22 tive agreement under subsection (a) unless the applicant 23 develops an implementation plan to develop and implement 24 policies, practices, procedures, and controls related to— 25 VerDate Sep 11 2014 22:34 Mar 03, 2021 Jkt 019200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H831.IH H831 pbinns on DSKJLVW7X2PROD with BILLS 11 •HR 831 IH ‘‘(1) improving data quality and reporting time- 1 liness; 2 ‘‘(2) data security, in accordance with the most 3 recent versions of the Cybersecurity Framework and 4 Privacy Framework (or successor frameworks) of the 5 National Institute of Standards and Technology; and 6 ‘‘(3) confidentiality and privacy of any informa- 7 tion that pertains to an individual and from which, 8 either alone or in combination with other reasonably 9 available information, the individual’s identity can be 10 determined, including policies, practices, procedures, 11 and controls for— 12 ‘‘(A) minimizing collection, processing, 13 maintenance, retention, and disclosure of such 14 information to what is necessary, proportionate, 15 and limited for a good faith public health pur- 16 pose that is clearly described and limited in an 17 agreement between the Federal Government 18 and the recipient; 19 ‘‘(B) prohibiting disclosure of such infor- 20 mation to persons, including government enti- 21 ties, absent legal safeguards included in Federal 22 or State laws or regulations, for protecting the 23 security and privacy of such information; and 24 VerDate Sep 11 2014 22:34 Mar 03, 2021 Jkt 019200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\H831.IH H831 pbinns on DSKJLVW7X2PROD with BILLS 12 •HR 831 IH ‘‘(C) making the data available to the Na- 1 tional Center for Health Statistics for statistical 2 purposes under subchapter III of chapter 35 of 3 title 44, United States Code. 4 ‘‘(c) COVID–19 REPORTING.—The Secretary may 5 not award a grant or cooperative agreement under sub- 6 section (a) unless the applicant agrees— 7 ‘‘(1) to use the grant for activities under sub- 8 section (a) with respect to COVID–19, including 9 with respect to— 10 ‘‘(A) testing results data; 11 ‘‘(B) testing results turnaround time; 12 ‘‘(C) hospitalization and intensive care unit 13 data; 14 ‘‘(D) new infections among health care 15 workers; 16 ‘‘(E) new cases among quarantined con- 17 tacts; and 18 ‘‘(F) long-term care facilities, prisons, and 19 other congregate settings; and 20 ‘‘(2) in carrying out such activities, to 21 disaggregate data by age, sex, race, ethnicity, sexual 22 orientation, gender identity, and Zip Code, as appro- 23 priate and to the extent possible. 24 VerDate Sep 11 2014 22:34 Mar 03, 2021 Jkt 019200 PO 00000 Frm 00012 Fmt 6652 Sfmt 6201 E:\BILLS\H831.IH H831 pbinns on DSKJLVW7X2PROD with BILLS 13 •HR 831 IH ‘‘(d) APPLICATION.—A public health reporting entity 1 applying for a grant or cooperative agreement under this 2 section shall submit an application to the Secretary at 3 such time and in such manner as the Secretary may re- 4 quire. 5 ‘‘(e) DEFINITION.—In this section, the term ‘public 6 health reporting entity’ means any entity that reports data 7 to the Centers for Disease Control and Prevention or an- 8 other public health authority, [Text truncated for display. 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