Title: Improving DATA in Public Health Act
Policy area: Health

Summary:
Improving Data Accessibility Through Advancements in Public Health Act or the Improving DATA in Public Health Act
This bill addresses the collection and reporting of public health data with a particular focus on electronic health information.
Specifically, the Centers for Disease Control and Prevention (CDC) must designate data and technology standards for public health data systems no later than two years after enactment of this act. These standards must, among other requirements, align with standards designated by the Office of the National Coordinator for Health Information Technology (ONC). In addition, the ONC must study matters concerning the use of standards for certain laboratory information.
Further, the CDC may require, subject to some limits, additional reporting of public health and health care data by health care providers, health departments, and other entities for public health surveillance.
Additionally, the bill addresses agreements regarding access to, exchange of, and use of public health data, including for public health preparedness and response activities. The Department of Health and Human Services (HHS) must develop or update interagency agreements while the CDC and the Office of the Assistant Secretary for Preparedness and Response may develop and update agreements with health departments and other nonfederal entities.
The bill also requires HHS to award grants and other support for developing and disseminating best practices to collect electronic health information. Entities eligible for the awards include state, tribal, and local governments; health care providers; and nonprofits.

[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[S. 3913 Introduced in Senate (IS)]

<DOC>






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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