Sec. 5. Commission on ensuring data for heath equity
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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. The Commission shall be composed of— 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, to be appointed by the Secretary; and 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.
The President of the National Academies of Sciences, Engineering, and Medicine, or designee, shall serve as the chairperson of the Commission. The Commission shall— examine barriers to collecting, analyzing, and using demographic data; 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 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; 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 disparities.
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— 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; 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; 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; 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; to the extent possible, an analysis of sex, gender, sexual orientation, and gender identity disparities in COVID–19 treatment and mortality; 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; 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 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. There is authorized to be appropriated such sums as may be necessary to carry out this section.