Improving DATA in Public Health Act
Bill: H.R.8481 | Sponsor: Rep. Underwood, Lauren (D-IL)
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. The CDC must establish a committee to advise on the implementation of this reporting.
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.

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 uses 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 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 among 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 among the Centers for 
        Disease Control and Prevention, the Office of the Assistant 
        Secretary for Preparedness and Response, and external entities, 
        including State, Tribal, local, 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 memoranda of understanding 
        and other 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 (in this section referred to 
as the `Secretary') 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; and
            ``(4) other entities, as determined appropriate by the 
        Secretary.
    ``(b) Content, Form, Manner, and Frequency.--
            ``(1) Collaboration.--The Secretary shall collaborate with 
        representatives of State, local, and Tribal health departments 
        and other entities on determining the content, form, manner, 
        and frequency of the reporting of public health and health care 
        data and information required pursuant to subsection (a).
            ``(2) Simultaneous reporting.--In determining the content, 
        form, manner, and frequency of the reporting of public health 
        and health care data and information pursuant to subsection 
        (a), where a disease, condition, or related event is reportable 
        under applicable State or local law, the Secretary shall 
        require the data and information to be reported first or 
        simultaneously to the appropriate State or local jurisdiction.
            ``(3) Alignment with standards and implementation 
        specifications.--The content, form, manner, and frequency 
        requirements required pursuant to this section shall align with 
        the standards and implementation specifications adopted by the 
        Secretary under section 3004, where applicable.
            ``(4) Reasonable efforts to limit reporting.--The Secretary 
        shall make reasonable efforts to limit the public health and 
        health care data and information required to be reported under 
        this section to the minimum necessary to accomplish the 
        intended public health purpose.
            ``(5) Implementation and regulations.--The Secretary--
                    ``(A) may promulgate by regulation the content, 
                form, manner, and frequency in which public health and 
                health care data and information is required to be 
                reported under this section; and
                    ``(B) in the event of a public health emergency 
                declared under section 319, or where the Secretary 
                determines there is a significant potential for such an 
                emergency to exist, may issue such requirements--
                            ``(i) by guidance in accordance with this 
                        section; and
                            ``(ii) without regard to the procedures 
                        otherwise required by section 553 of title 5, 
                        United States Code.
    ``(c) Ensuring That Data Is Accessible in a Timely Manner to State, 
Local, and Tribal Health Authorities.--
            ``(1) Collaboration.--The Secretary shall collaborate with 
        representatives of State, local, and Tribal health departments, 
        and entities representing such departments, to ensure that data 
        and information that is collected by the Centers for Disease 
        Control and Prevention pursuant to this section are accessible, 
        as appropriate, in a timely manner, to State, local, and Tribal 
        health authorities.
            ``(2) Rules of construction.--Nothing in this section shall 
        be construed--
                    ``(A) to prevent any Federal agency, State, local, 
                or Tribal health department, or other entity from 
                collecting data or information under other applicable 
                law; or
                    ``(B) to limit the authority of the Centers for 
                Disease Control and Prevention to share public health 
                surveillance data with State, local, or Tribal health 
                authorities.
            ``(3) Reasonable efforts to reduce reporting burdens and 
        potential duplication.--The Secretary shall make reasonable 
        efforts to collaborate with representatives of Federal agencies 
        and State, local, and Tribal health departments to reduce 
        reporting burdens and potential duplication of reporting 
        requirements. Such efforts may include ensuring simultaneous 
        sharing of data and information described in subsection (b) 
        with State, local, and Tribal public health agencies.
    ``(d) Confidentiality and Protection of Data.--Any identifiable, 
sensitive information (as defined in section 301(d)) reported to the 
Centers for Disease Control and Prevention pursuant to this section 
shall not be further disclosed or provided to any other individual or 
party, including any party involved in civil, criminal, or 
administrative litigation, except--
            ``(1) as necessary for public health purposes, including 
        with relevant Federal, State, local, or tribal public health 
        authorities;
            ``(2) as required under section 552a(d)(1) of title 5, 
        United States Code;
            ``(3) as required by applicable Federal laws, excluding 
        instances of disclosure in any Federal, State, or local civil, 
        criminal, administrative, legislative, or other proceeding; or
            ``(4) with the consent of each individual to whom the 
        information pertains.
    ``(e) Exemption of Certain Public Health Data From Disclosure.--The 
Secretary may exempt from disclosure under section 552(b)(3) of title 
5, United States Code, public health and health care data and 
information collected by the Centers for Disease Control and Prevention 
pursuant to this section or any other authority under which the Centers 
collects public health or health care data and information if--
            ``(1) an individual is identified through such data or 
        information; or
            ``(2) there is at least a very small risk, as determined by 
        current scientific practices or statistical methods, that some 
        combination of the data or information, the request for 
        disclosure under such section 552(b)(3), and other available 
        data sources or the application of technology could be used to 
        deduce the identity of the individuals to which such data or 
        information pertains.

``SEC. 310C. PUBLIC HEALTH INFORMATION SHARING AND AVAILABILITY 
              ADVISORY COMMITTEE.

    ``(a) Establishment.--The Secretary, acting through the Director of 
the Centers for Disease Control and Prevention, shall establish an 
advisory committee, to be known as the Public Health Information 
Sharing and Availability Advisory Committee, to advise, and make 
recommendations to, the Director with respect to the implementation of 
public health and health care data and information reporting and 
sharing under section 310B.
    ``(b) Membership.--The membership of the advisory committee 
established pursuant to this section shall include--
            ``(1) individuals with subject matter expertise or 
        experience in the following areas of public health and health 
        care data and information, including--
                    ``(A) State, territorial, local, and Tribal health 
                department data systems or practices; and
                    ``(B) health care data;
            ``(2) ex officio members, including from relevant Federal 
        agencies such as the Office of the National Coordinator for 
        Health Information Technology, the Centers for Medicare & 
        Medicaid Services, the Centers for Disease Control and 
        Prevention, and the Office of the Assistant Secretary for 
        Health;
            ``(3) representatives of national organizations, including 
        the Council of State and Territorial Epidemiologists, the 
        Association of Public Health Laboratories, the Association of 
        State and Territorial Health Officials, the National 
        Association of County and City Health Officials, and the Big 
        Cities Health Coalition; and
            ``(4) such additional members as the Secretary deems 
        appropriate.
    ``(c) FACA Applicability.--The advisory committee established 
pursuant to this section is deemed to be an advisory committee subject 
to the Federal Advisory Committee Act.''.
    (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--
                    (A) to improve the quality and completeness of 
                data, including demographic data, collected, accessed, 
                or used for public health purposes; and
                    (B) 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, at a minimum, include--
                    (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 the 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) Nonduplication 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 is 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 at the end the 
following:
            ``(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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