[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[S. 3913 Introduced in Senate (IS)]
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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.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Improving Data Accessibility Through
Advancements in Public Health Act'' or the ``Improving DATA in Public
Health Act''.
SEC. 2. SUPPORTING PUBLIC HEALTH DATA AVAILABILITY AND ACCESS.
(a) Designation of Public Health Data Standards.--Section
2823(a)(2) of the Public Health Service Act (42 U.S.C. 300hh-33(a)(2))
is amended--
(1) by striking ``In carrying out'' and inserting the
following:
``(A) In general.--In carrying out'';
(2) by striking ``shall, as appropriate and'' and inserting
``shall, not later than 2 years after the date of enactment of
the Improving DATA in Public Health Act,''; and
(3) by adding at the end the following:
``(B) Selection of data and technology standards.--
The standards designated as described in subparagraph
(A) may include standards to improve--
``(i) the exchange of electronic health
information for--
``(I) electronic case reporting;
``(II) syndromic surveillance;
``(III) reporting of vital
statistics; and
``(IV) reporting test orders and
results electronically, including from
laboratories;
``(ii) automated electronic reporting to
relevant public health data systems of the
Centers for Disease Control and Prevention; and
``(iii) such other use cases as the
Secretary determines appropriate.
``(C) No duplicative efforts.--
``(i) In general.--In carrying out the
requirements of this paragraph, the Secretary,
in consultation with the Office of the National
Coordinator for Health Information Technology,
may use input gathered (including input and
recommendations gathered from the Health
Information Technology Advisory Committee), and
materials developed, prior to the date of
enactment of the Improving DATA in Public
Health Act.
``(ii) Designation of standards.--
Consistent with sections 13111 and 13112 of the
HITECH Act, the data and technology standards
designated pursuant to this paragraph shall
align with the standards and implementation
specifications previously adopted by the
Secretary pursuant to section 3004, as
applicable.
``(D) Privacy and security.--Nothing in this
paragraph shall be construed as modifying applicable
Federal or State information privacy or security law.
``(E) Considerations.--Standards designated under
this paragraph shall include standards and
implementation specifications necessary to ensure the
appropriate capture, exchange, access, and use, of
information regarding race, ethnicity, sex (including
sexual orientation and gender identity), disability
status, veteran status, housing status, age, functional
status, and other elements.''.
(b) Study on Laboratory Information Standards.--
(1) In general.--Not later than 1 year after the date of
enactment of this Act, the Office of the National Coordinator
for Health Information Technology shall conduct a study to
review the use of standards for electronic ordering and
reporting of laboratory test results.
(2) Areas of concentration.--In conducting the study under
paragraph (1), the Office of the National Coordinator for
Health Information Technology shall--
(A) determine the extent to which clinical
laboratories are using standards for electronic
ordering and reporting of laboratory test results;
(B) assess trends in laboratory compliance with
standards for ordering and reporting laboratory test
results and the effect of such trends on the
interoperability of laboratory data with public health
data systems;
(C) identify challenges related to collection and
reporting of demographic and other data elements with
respect to laboratory test results;
(D) identify any challenges associated with using
or complying with standards and reporting laboratory
test results with data elements identified in standards
for electronic ordering and reporting of such results;
and
(E) review other relevant areas determined
appropriate by the Office of the National Coordinator
for Health Information Technology.
(3) Report.--Not later than 2 years after the date of
enactment of this Act, the Office of the National Coordinator
for Health Information Technology shall submit to the Committee
on Health, Education, Labor, and Pensions of the Senate and the
Committee on Energy and Commerce of the House of
Representatives a report concerning the findings of the study
conducted under paragraph (1).
(c) Supporting Information Sharing Through Data Use Agreements.--
(1) Interagency data use agreements within the department
of health and human services for public health emergencies.--
(A) In general.--The Secretary of Health and Human
Services (referred to in this subsection as the
``Secretary'') shall, as appropriate, facilitate the
development of, or updates to, memoranda of
understanding, data use agreements, or other applicable
interagency agreements regarding appropriate access,
exchange, and use of public health data between the
Centers for Disease Control and Prevention, the Office
of the Assistant Secretary for Preparedness and
Response, other relevant agencies or offices within the
Department of Health and Human Services, and other
relevant Federal agencies, in order to prepare for,
identify, monitor, and respond to declared or potential
public health emergencies.
(B) Requirements.--In carrying out activities
pursuant to subparagraph (A), the Secretary shall--
(i) ensure that the agreements and
memoranda of understanding described in such
subparagraph--
(I) address the methods of granting
access to data held by one agency or
office with another to support the
respective missions of such agencies or
offices;
(II) consider minimum necessary
principles of data sharing for
appropriate use;
(III) include appropriate privacy
and cybersecurity protections; and
(IV) are subject to regular
updates, as appropriate;
(ii) collaborate with the Centers for
Disease Control and Prevention, the Office of
the Assistant Secretary for Preparedness and
Response, the Office of the Chief Information
Officer, and, as appropriate, the Office of the
National Coordinator for Health Information
Technology, and other entities within the
Department of Health and Human Services; and
(iii) consider the terms and conditions of
any existing data use agreements with other
public or private entities and any need for
updates to such existing agreements, consistent
with paragraph (2).
(2) Data use agreements with external entities.--The
Secretary, acting through the Director of the Centers for
Disease Control and Prevention and the Assistant Secretary for
Preparedness and Response, may update memoranda of
understanding, data use agreements, or other applicable
agreements and contracts to improve appropriate access,
exchange, and use of public health data between the Centers for
Disease Control and Prevention and the Office of the Assistant
Secretary for Preparedness and Response and external entities,
including State, Tribal, and territorial health departments,
laboratories, hospitals and other health care providers,
electronic health records vendors, and other entities, as
applicable and appropriate, in order to prepare for, identify,
monitor, and respond to declared or potential public health
emergencies.
(3) Report.--Not later than 90 days after the date of
enactment of this Act, the Secretary shall report to the
Committee on Health, Education, Labor, and Pensions of the
Senate and the Committee on Energy and Commerce of the House of
Representatives on the status of the agreements under this
subsection.
(d) Improving Information Sharing and Availability of Public Health
Data.--Part A of title III of the Public Health Service Act (42 U.S.C.
241 et seq.) is amended by adding at the end the following:
``SEC. 310B. IMPROVING INFORMATION SHARING AND AVAILABILITY OF PUBLIC
HEALTH DATA.
``(a) In General.--The Secretary, acting through the Director of
the Centers for Disease Control and Prevention, may require the
reporting of public health and health care data and information to the
Centers for Disease Control and Prevention by--
``(1) health care providers and facilities, including
pharmacies;
``(2) public health, clinical, and other laboratories and
diagnostic testing entities;
``(3) State, local, and Tribal health departments;
``(4) health information exchanges and health information
networks; and
``(5) other entities, as determined by the Secretary.
``(b) Content, Form, and Manner.--The Secretary shall prescribe the
content, form, manner, and frequency of the reporting of public health
and health care data and information required by subsection (a),
including necessary demographic data or other data elements that the
Secretary determines is necessary for public health surveillance under
this section. The Secretary may collaborate with representatives of
State, local, and Tribal health departments and other entities, in
developing the content, form, manner, and frequency requirement under
this subsection. Such requirements shall align with the standards and
implementation specifications adopted by the Secretary under section
3004, as applicable.
``(c) Decreased Burden.--The Secretary shall make reasonable
efforts to limit public health and health care data and information
reported under this section to the minimum necessary information needed
to accomplish the intended public health purpose.
``(d) Access by Relevant Public Health Authorities.--The Secretary
shall collaborate with representatives of State, local, and Tribal
health departments, and entities representing such departments to
ensure data collected under this section is accessible, as appropriate,
to State, local, or Tribal health authorities. Nothing in this section
shall be construed to limit the authority to share public health
surveillance data with State, local, or Tribal health authorities.
``(e) Exemption of Certain Public Health Data From Disclosure.--The
Secretary, acting through the Director of the Centers for Disease
Control and Prevention, may exempt from disclosure under section
552(b)(3) of title 5, United States Code, public health data that are
collected by the Centers for Disease Control and Prevention, if--
``(1) an individual is identified through such data; or
``(2) there is at least a very small risk, as determined by
current scientific practices or statistical methods, that some
combination of the information, the request, and other
available data sources or the application of technology could
be used to deduce the identity of an individual.''.
(e) Improving Public Health Data Collection.--
(1) In general.--The Secretary of Health and Human Services
(referred to in this subsection as the ``Secretary'') shall
award grants, contracts, or cooperative agreements to eligible
entities for purposes of identifying, developing, or
disseminating best practices in the collection of electronic
health information and the use of designated data standards and
implementation specifications to improve the quality and
completeness of data, including demographic data, collected,
accessed, or used for public health purposes and to address
health disparities and related health outcomes.
(2) Eligible entities.--To be eligible to receive an award
under this subsection an entity shall--
(A) be a health care provider, academic medical
center, community-based organization, State, local
governmental entity, Indian Tribe or Tribal
organization (as such terms are defined in section 4 of
the Indian Self Determination and Education Assistance
Act (25 U.S.C. 5304)), urban Indian organization (as
defined in section 4 of the Indian Health Care
Improvement Act (25 U.S.C. 1603)), or other appropriate
public or private nonprofit entity, or a consortia of
any such entities; and
(B) submit an application to the Secretary at such
time, in such manner, and containing such information
as the Secretary may require.
(3) Activities.--Entities receiving awards under this
subsection shall use such award to develop and test best
practices for training health care providers to use standards
and implementation specifications that assist in the capture,
access, exchange, and use of electronic health information,
including demographic information, disability status, veteran
status, housing status, functional status, and other data
elements. Such activities shall include, at a minimum--
(A) improving, understanding, and using data
standards and implementation specifications;
(B) developing or identifying methods to improve
communication with patients in a culturally and
linguistically appropriate manner, including to better
capture information related to demographics of such
individuals;
(C) developing methods for accurately categorizing
and recording patient responses using available data
standards;
(D) educating providers regarding the utility of
such information for public health purposes and the
importance of accurate collection and recording of such
data; and
(E) other activities, as the Secretary determines
appropriate.
(4) Reporting.--
(A) Reporting by award recipients.--Each recipient
of an award under this subsection shall submit to the
Secretary a report on the results of best practices
identified, developed, or disseminated through such
award.
(B) Report to congress.--Not later than 1 year
after the completion of the program under this
subsection, the Secretary shall submit a report to
Congress on the success of best practices developed
under such program, opportunities for further
dissemination of such best practices, and
recommendations for improving the capture, access,
exchange, and use of information to improve public
health and reduce health disparities.
(5) Non-duplication of efforts.--The Secretary shall ensure
that the activities and programs carried out under this
subsection are free of unnecessary duplication of effort.
(6) Authorization of appropriations.--There are authorized
to be appropriated $10,000,000 for each of fiscal years 2023
through 2025 to carry out this subsection.
(f) Information Collection.--Section 319D(a) of the Public Health
Service Act (42 U.S.C. 247d-4(a)) is amended by adding the following
new paragraph:
``(5) Information collection.--Subchapter I of chapter 35
of title 44, United States Code, shall not apply to information
collection by the Centers for Disease Control and Prevention,
including the Agency for Toxic Substances and Disease Registry,
that are part of investigations, research, surveillance, or
evaluations undertaken for public health purposes.''.
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