Equitable Data Collection and Disclosure on COVID–19 Act of 2021
Bill: H.R.1370 | Sponsor: Rep. Pressley, Ayanna (D-MA)
Policy area: Health

Summary:
Equitable Data Collection and Disclosure on COVID-19 Act of 2021
This bill expands data collection and reporting on demographic information and disparities related to COVID-19 (i.e., coronavirus disease 2019).
During the COVID-19 emergency, the Centers for Disease Control and Prevention (CDC) and the Centers for Medicare & Medicaid Services must publish data on COVID-19 testing, treatment, vaccinations, and outcomes on the CDC website. They must update the data daily and disaggregate it by race, ethnicity, and other demographic factors.
In addition, the Indian Health Service must consult with tribal nations about COVID-19 data collection and reporting.
The Department of Health and Human Services must make a summary of final statistics related to COVID-19 publicly available and report specified information to Congress within 60 days of the end of the COVID-19 emergency.
The bill also establishes the Commission on Ensuring Data for Health Equity. The commission must determine approaches to using data to reduce disparities in health outcomes, including specifically with respect to COVID-19. In addition, it must provide recommendations to improve demographic data collection and use in future public health emergencies.

To require the Centers for Disease Control and Prevention to collect 
              and report certain data concerning COVID-19.

    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 ``Equitable Data Collection and 
Disclosure on COVID-19 Act of 2021''.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) The World Health Organization (WHO) declared COVID-19 a 
        ``Public Health Emergency of International Concern'' on January 
        30, 2020. By late January 2021, there have been over 22,000,000 
        confirmed cases of, and 383,351 deaths associated with, COVID-
        19 in the United States.
            (2) From the beginning of this pandemic, Black, Brown, and 
        American Indian/Alaska Native (in this section referred to as 
        ``AI/AN'') people in the United States have suffered the 
        largest burden of illness, hospitalization, and death from 
        COVID-19. The Centers for Disease Control and Prevention (CDC) 
        reports that AI/AN people are 4 times as likely as White people 
        to be hospitalized for COVID-19, and that Black and Hispanic/
        Latino people are 2.8 times as likely to die of COVID-19 as 
        White people.
            (3) Historically, structures and systems such as racism, 
        ableism, and class oppression have rendered affected Black and 
        Brown communities more vulnerable to inequities and have 
        prevented people from achieving optimal health even when there 
        is not a crisis of pandemic proportions, highlighting that 
        racism and not race presents as a risk factor driving 
        inequities in illness and death.
            (4) Significant differences in access to health care, 
        specifically to primary health care providers, health care 
        information, and greater perceived discrimination in health 
        care place Black, Brown, and AI/AN communities, individuals 
        with disabilities, and Limited English Proficient individuals 
        at greater risk of receiving delayed, and perhaps poorer, 
        health care.
            (5) Stark racial inequities across the United States, 
        including unequal access to stable housing, quality education, 
        and decent employment, significantly impact the ability of 
        Black, Hispanic/Latinx, and AI/AN individuals to take care of 
        their most basic health needs. Black and Brown communities are 
        more likely to experience homelessness and struggle with low-
        paying jobs or unemployment. An analysis by the University of 
        New Hampshire found that in every month between March and 
        August 2020, Black and Latino workers had significantly higher 
        unemployment rates than White workers, even after adjusting for 
        age and education status.
            (6) Black, Hispanic/Latinx, and AI/AN communities 
        experience higher rates of chronic disease and disabilities, 
        such as diabetes, hypertension, and asthma, than non-Hispanic 
        White communities, which predisposes them to greater risk of 
        complications and mortality should they contract COVID-19.
            (7) Research experts recognize that there are underlying 
        differences in illness and death when each of these factors is 
        examined through socioeconomic and racial or ethnic lenses. 
        These socially determinant factors of health accelerate disease 
        and degradation.
            (8) Language barriers are highly correlated with medication 
        noncompliance and inconsistent engagement with health systems. 
        Without language accessibility data and research around COVID-
        19, communities with limited English proficiency are less 
        likely to receive critical testing and preventive health 
        services. Yet, to date, the Centers for Disease Control and 
        Prevention does not disseminate COVID-19 messaging in critical 
        languages, including Mandarin Chinese, Spanish, and Korean 
        within the same timeframe as information in English despite 
        requirements to ensure limited English proficient populations 
        are not discriminated against under title VI of the Civil 
        Rights Act of 1964 and subsequent laws and Federal policies.
            (9) Further, it is critical to disaggregate data further by 
        ancestry to address disparities among Asian American, Native 
        Hawaiian, and Pacific Islander groups. According to the 
        National Equity Atlas, while 13 percent of the Asian population 
        overall lived in poverty in 2015, 39 percent of Burmese people, 
        29 percent of Hmong people, and 21 percent of Pacific Islanders 
        lived in poverty.
            (10) Utilizing disaggregation of enrollment in Affordable 
        Care Act-sponsored health insurance, the Asian and Pacific 
        Islander American Health Forum found that prior to the passage 
        of the Patient Protection and Affordable Care Act (Public Law 
        111-148), Korean Americans had a high uninsured rate of 23 
        percent, compared to just 12 percent for all Asian Americans. 
        Developing targeted outreach efforts assisted 1,000,000 people 
        and resulted in a 56 percent decrease in the uninsured among 
        the Asian, Native Hawaiian, and Pacific Islander population. 
        Such efforts show that disaggregated data is essential to 
        public health mobilizations efforts.
            (11) Without clear understanding of how COVID-19 impacts 
        marginalized racial and ethnic communities, there will be 
        exacerbated risk of endangering the most historically 
        vulnerable of our Nation. A recent national study found that 
        American Indian/Alaska Natives were 3.5 times more likely to be 
        infected with COVID-19, however that data excluded 27 States as 
        they had reported less than 70 percent of race/ethnicity data 
        to the Centers for Disease Control and Prevention making it 
        impossible to include them in the analysis thus creating a 
        significant data gap for understanding the impact of COVID-19 
        on this vulnerable population.
            (12) The consequences of misunderstanding the racial and 
        ethnic impact of COVID-19 expound beyond communities of color 
        such that it would impact all.
            (13) Race and ethnicity are valuable research and practice 
        variables when used and interpreted appropriately. Health data 
        collected on patients by race and ethnicity will boost and more 
        efficiently direct critical resources and inform risk 
        communication development in languages and at appropriate 
        health literacy levels, which resonate with historically 
        vulnerable communities of color.
            (14) To date, race and ethnicity data on COVID-19 cases, 
        test, hospitalizations, deaths, and vaccinations is incomplete 
        and lacking. The inconsistency of data collection by Federal, 
        State, and local health authorities poses a threat to analysis 
        and synthesis of the pandemic impact on Black, Hispanic/Latinx, 
        and AI/AN communities. However, research and medical experts of 
        Historically Black Colleges and Universities and Tribal 
        Colleges and Universities, academic health care institutions 
        which are historically and geographically embedded in 
        minoritized and marginalized communities, generally also 
        possess rapport with the communities they serve. They are well-
        positioned, as trusted thought leaders and health care service 
        providers, to collect data and conduct research toward creating 
        holistic solutions to remedy the inequitable impact of this and 
        future public health crises.
            (15) Well-designed, ethically sound research aligns with 
        the goals of medicine, addresses questions relevant to the 
        population among whom the study will be carried out, balances 
        the potential for benefit against the potential for harm, 
        employs study designs that will yield scientifically valid and 
        significant data, and generates useful knowledge.
            (16) The dearth of racially and ethnically disaggregated 
        data reflecting the health of Black, Hispanic/Latinx, and AI/AN 
        communities underlies the challenges of a fully informed public 
        health response.
            (17) Without collecting race and ethnicity data associated 
        with COVID-19 vaccinations, testing, hospitalizations, 
        morbidities, and mortalities, as well as publicly disclosing 
        it, Black, Hispanic/Latinx, and AI/AN communities will remain 
        at greater risk of disease and death.

SEC. 3. EMERGENCY FUNDING FOR FEDERAL DATA COLLECTION ON THE RACIAL, 
              ETHNIC, AND OTHER DEMOGRAPHIC DISPARITIES OF COVID-19.

    To conduct or support data collection on the racial, ethnic, and 
other demographic implications of COVID-19 in the United States and its 
territories, including support to assist in the capacity building for 
State and local public health departments to collect and transmit 
racial, ethnic, and other demographic data to the relevant Department 
of Health and Human Services agencies, there is authorized to be 
appropriated--
            (1) to the Centers for Disease Control and Prevention, 
        $12,000,000;
            (2) to State and territorial public health agencies, 
        distributed proportionally based on the total population of 
        their residents who are enrolled in Medicaid or who have no 
        health insurance, $15,000,000;
            (3) to the Indian Health Service, Indian Tribes and Tribal 
        organizations (as defined in section 4 of the Indian Self-
        Determination and Education Assistance Act), and urban Indian 
        organizations (as defined in section 4 of the Indian Health 
        Care Improvement Act), $3,000,000;
            (4) to the Centers for Medicare & Medicaid Services, 
        $5,000,000;
            (5) to the Food and Drug Administration, $5,000,000;
            (6) to the Agency for Healthcare Research and Quality, 
        $5,000,000; and
            (7) to the Office of the National Coordinator for Health 
        Information Technology, $5,000,000.

SEC. 4. COVID-19 DATA COLLECTION AND DISCLOSURE.

    (a) Data Collection.--The Secretary of Health and Human Services 
(referred to in this Act as the ``Secretary''), acting through the 
Director of the Centers for Disease Control and Prevention and the 
Administrator of the Centers for Medicare & Medicaid Services, shall 
make publicly available on the website of the Centers for Disease 
Control and Prevention data collected across all surveillance systems 
relating to COVID-19, disaggregated by race, ethnicity, sex, age, 
primary language, socioeconomic status, disability status, and county, 
including the following:
            (1) Data related to all COVID-19 testing, including the 
        number of individuals tested and the number of tests that were 
        positive.
            (2) Data related to treatment for COVID-19, including 
        hospitalizations and intensive care unit admissions.
            (3) Data related to COVID-19 outcomes, including total 
        fatalities and case fatality rates (expressed as the proportion 
        of individuals who were infected with COVID-19 and died from 
        the virus).
            (4) Data related to COVID-19 vaccinations, including--
                    (A) the number of vaccines administered;
                    (B) the number of vaccinations offered, accepted, 
                and refused;
                    (C) the most common reasons for refusal; and
                    (D) the percentage of vaccine doses allocated and 
                administered to each priority group.
    (b) Application of Standards.--To the extent practicable, data 
collection under this section shall follow standards developed by the 
Department of Health and Human Services Office of Minority Health and 
be collected, analyzed, and reported in accordance with the standards 
promulgated by the Assistant Secretary for Planning and Evaluation 
under title XXXI of the Public Health Service Act (42 U.S.C. 300kk et 
seq.).
    (c) Timeline.--The data made available under this section shall be 
updated on a daily basis throughout the public health emergency.
    (d) Privacy.--In publishing data under this section, the Secretary 
shall take all necessary steps to protect the privacy of individuals 
whose information is included in such data, including--
            (1) complying with privacy protections provided under the 
        regulations promulgated under section 264(c) of the Health 
        Insurance Portability and Accountability Act of 1996; and
            (2) protections from all inappropriate internal use by an 
        entity that collects, stores, or receives the data, including 
        use of such data in determinations of eligibility (or continued 
        eligibility) in health plans, and from inappropriate uses.
    (e) Indian Health Service.--The Indian Health Service shall consult 
with Indian Tribes and confer with urban Indian organizations on data 
collection and reporting for purposes of this Act.
    (f) Summary.--Not later than 60 days after the date on which the 
Secretary certifies that the public health emergency related to COVID-
19 has ended, the Secretary shall make publicly available a summary of 
the final statistics related to COVID-19.
    (g) Report.--Not later than 60 days after the date on which the 
Secretary certifies that the public health emergency related to COVID-
19 has ended, the Department of Health and Human Services shall compile 
and submit to the Committee on Health, Education, Labor, and Pensions 
and the Committee on Finance of the Senate and the Committee on Energy 
and Commerce and the Committee on Ways and Means of the House of 
Representatives a preliminary report--
            (1) describing the testing, hospitalization, mortality 
        rates, vaccination rates, and preferred language of patients 
        associated with COVID-19 by race and ethnicity; and
            (2) proposing evidenced-based response strategies to 
        safeguard the health of these communities in future pandemics.
    (h) Tribal Exception.--Indian Tribes may opt out of any of the 
requirements of this section.

SEC. 5. COMMISSION ON ENSURING DATA FOR HEATH EQUITY.

    (a) In General.--Not later than 30 days after the date of enactment 
of this Act, the Secretary shall establish a commission, to be known as 
the ``Commission on Ensuring Data for Heath Equity'' (referred to in 
this section as the ``Commission'') to provide clear and robust 
guidance on how to improve the collection, analysis, and use of 
demographic data in responding to future public health emergencies.
    (b) Membership and Chairperson.--
            (1) Membership.--The Commission shall be composed of--
                    (A) the Director of the Centers for Disease Control 
                and Prevention;
                    (B) the Director of the National Institutes of 
                Health;
                    (C) the Commissioner of Food and Drugs;
                    (D) the Administrator of the Federal Emergency 
                Management Agency;
                    (E) the Director of the National Institute on 
                Minority Health and Health Disparities;
                    (F) the Director of the Indian Health Service;
                    (G) the Administrator of the Centers for Medicare & 
                Medicaid Services;
                    (H) the Director of the Agency for Healthcare 
                Research and Quality;
                    (I) the Surgeon General;
                    (J) the Administrator of the Health Resources and 
                Services Administration;
                    (K) the Director of the Office of Minority Health;
                    (L) the Director of the Office of Women's Health;
                    (M) the Chairperson of the National Council on 
                Disability;
                    (N) at least 4 State, local, territorial, and 
                Tribal public health officials representing departments 
                of public health, or an urban Indian health 
                representative, who shall represent jurisdictions from 
                different regions of the United States with relatively 
                high concentrations of historically marginalized 
                populations, to be appointed by the Secretary; and
                    (O) at least 3 independent experts of racially and 
                ethnically diverse representation with knowledge or 
                field experience with racial and ethnic disparities in 
                public health appointed by the Secretary.
            (2) Chairperson.--The President of the National Academies 
        of Sciences, Engineering, and Medicine, or designee, shall 
        serve as the chairperson of the Commission.
    (c) Duties.--The Commission shall--
            (1) examine barriers to collecting, analyzing, and using 
        demographic data;
            (2) determine how to best use such data to promote health 
        equity across the United States and reduce racial, Tribal, and 
        other demographic disparities in health outcomes;
            (3) gather available data related to treatment of 
        individuals with disabilities during the COVID-19 pandemic and 
        other public health emergencies, including access to 
        vaccinations, denial of treatment for pre-existing conditions, 
        removal or denial of disability related equipment (including 
        ventilators and CPAP machines), and data on completion of DNR 
        orders, and identify barriers to obtaining accurate and timely 
        data related to treatment of such individuals;
            (4) solicit input from public health officials, community-
        connected organizations, health care providers, State and local 
        agency officials, Tribal officials, and other experts on 
        barriers to, and best practices for, collecting demographic 
        data; and
            (5) recommend policy changes that the data indicates are 
        necessary to reduce disparities.
    (d) Report.--Not later than 1 year after the date of enactment of 
this Act, the Commission shall submit a written report of its findings 
and recommendations to Congress and post such report on the website of 
the Department of Health and Human Services. Such reports shall contain 
information concerning--
            (1) how to enhance State, local, territorial, and Tribal 
        capacity to conduct public health research on COVID-19 and in 
        future public health emergencies, with a focus on expanded 
        capacity to analyze data on disparities correlated with race, 
        ethnicity, income, sex, age, disability status, specific 
        geographic areas, and other relevant demographic 
        characteristics, and an analysis of what demographic data is 
        currently being collected, the accuracy of that data and any 
        gaps, how this data is currently being used to inform efforts 
        to combat COVID-19, and what resources are needed to supplement 
        existing public health data collection;
            (2) how to collect, process, and disclose to the public the 
        data described in paragraph (1) in a way that maintains 
        individual privacy while helping direct the State, local, and 
        Tribal response to public health emergencies;
            (3) how to improve demographic data collection related to 
        COVID-19 and other public health emergencies in the short- and 
        long-term, including how to continue to grow and value the 
        Tribal sovereignty of data and information concerning urban and 
        rural Tribal communities;
            (4) to the extent possible, an analysis of racial and other 
        demographic disparities in COVID-19 mortality, including an 
        analysis of comorbidities and case fatality rates;
            (5) to the extent possible, an analysis of sex, gender, 
        sexual orientation, and gender identity disparities in COVID-19 
        treatment and mortality;
            (6) an analysis of COVID-19 treatment of individuals with 
        disabilities, including equity of access to treatment and 
        equipment and intersections of disability status with other 
        demographic factors, including race, and recommendations for 
        how to improve transparency and equity of treatment for such 
        individuals during the COVID-19 public health emergency and 
        future emergencies;
            (7) how to support State, local, and Tribal capacity to 
        eliminate barriers to vaccinations, testing, and treatment 
        during the COVID-19 pandemic and future public health 
        emergencies; and
            (8) to the extent possible, an analysis of Federal 
        Government policies that disparately exacerbate the COVID-19 
        impact, and recommendations to improve racial and other 
        demographic disparities in health outcomes.
    (e) Authorization of Appropriations.--There is authorized to be 
appropriated such sums as may be necessary to carry out this section.
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