Sec. 1012. Commission on Ensuring Data for Health Equity
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Not later than 30 days after the date of enactment of this Act, the Secretary of Health and Human Services (referred to in this section as the Secretary ) shall establish a commission, to be known as the Commission on Ensuring Data for Health Equity (referred to in this section as the Commission ) to provide clear and robust guidance to improve the collection, analysis, and use of demographic data in responding to future public health emergencies. The Commission shall be composed of— the Assistant Secretary for Preparedness and Response; the Director of the Centers for Disease Control and Prevention; the Director of the National Institutes of Health; the Commissioner of Food and Drugs; the Administrator of the Federal Emergency Management Agency; the Director of the National Institute on Minority Health and Health Disparities; the Director of the Indian Health Service; the Administrator of the Centers for Medicare & Medicaid Services; the Director of the Agency for Healthcare Research and Quality; the Surgeon General; the Administrator of the Health Resources and Services Administration; the Director of the Office of Minority Health; the Director of the Office of Women’s Health; the Chairperson of the National Council on Disability; 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 and rural populations, to be appointed by the Secretary; the National Coordinator for Health Information Technology; at least 3 independent individuals with expertise on racially and ethnically diverse representation with knowledge or field experience with community-based participatory research on racial and ethnic disparities in public health, to be appointed by the Secretary; and at least 4 individuals with expertise on health equity and demographic data disparities with knowledge of, or field experience in, language, disability status, sex, sexual orientation, gender identity, or socioeconomic status.
The Assistant Secretary for Preparedness and Response shall serve as the Chairperson of the Commission. The Commission shall— examine barriers to collecting, analyzing, and using demographic data in public health; 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; 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 preexisting conditions, removal or denial of disability related equipment (including ventilators and continuous positive airway pressure (commonly referred to as CPAP ) machines), and data on completion of do-not-resuscitate orders; and identify barriers to obtaining accurate and timely data related to treatment of such individuals; 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 recommend policy changes that the data indicates are necessary to reduce demographic disparities in health outcomes.
Not later than 1 year after the date of the enactment of this Act, the Commission shall submit to Congress, and publish on the website of the Department of Health and Human Services, a report containing— the findings of the Commission pursuant to subsection (c); 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; sex, sexual orientation, and gender identity disparities in COVID–19 treatment and mortality; and Federal Government policies that disparately exacerbate the COVID–19 impact, and recommendations to improve racial and other demographic disparities in health outcomes; 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; 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; and the Commission’s recommendations with respect to— 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, sexual orientation, gender identity, age, disability status, specific geographic areas, and other relevant demographic characteristics; how to collect, process, and disclose to the public the data described in subparagraph
(A)in a way that maintains individual privacy while helping direct the State, local, and Tribal response to public health emergencies; how to improve demographic data collection related to COVID–19 and other public health emergencies in the short-term and long-term, including how to continue to grow and value the Tribal sovereignty of data and information concerning urban and rural Tribal communities; how to improve transparency and equity of treatment for individuals with disabilities during the COVID–19 public health emergency and future public health emergencies; and how to support State, local, and Tribal capacity to eliminate barriers to vaccinations, testing, and treatment during the COVID–19 public health emergency and future public health emergencies. The Chairperson of the Commission may appoint and fix the pay of additional staff to the Commission as the Chairperson considers appropriate. The staff of the Commission may be appointed without regard to the provisions of title 5, United States Code, governing appointments in the competitive service, and may be paid without regard to the provisions of chapter 51 and subchapter III of chapter 53 of that title relating to classification and General Schedule pay rates. Any Federal Government employee may be detailed to the Commission without reimbursement from the Commission, and the detailee shall retain the rights, status, and privileges of his or her regular employment without interruption. The Secretary shall, in establishing the Commission under this section, take such steps as may be necessary to ensure that the work of the Commission does not overlap with, or otherwise duplicate, other Federal Government efforts with respect to ensuring health equity in data collection in public health emergencies. There are authorized to be appropriated such sums as may be necessary to carry out this section.