What’s the news: A lack of patient demographic data has hindered the nation’s response to the COVID-19 pandemic, so the AMA is urging Congress to pass legislation to address that problem.

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The AMA has expressed “strong support” for H.R. 6585, the “Equitable Data Collection and Disclosure on COVID-19 Act.” The bill, introduced by Rep. Robin Kelly, D-Ill., with more than 85 co-sponsors, would create a comprehensive and standardized national demographic data set that could help measure COVID-19 testing, treatment and outcomes among different populations.

Specifically, actions the bill calls for include:

  • Having the U.S. Health and Human Services Department collect and post data disaggregated by race, ethnicity, sex, age, tribal affiliation, socioeconomic status, disability status and county.
  • Incorporating information from these data points on COVID-19 testing, hospital and intensive care-unit admissions and lengths of stay, and fatalities.
  • Establishing an interagency commission to make recommendations on improving data collection and transparency and responding equitably to the COVID-19 crisis.

“The COVID-19 pandemic has had a severely disproportionate impact on our country’s minoritized and marginalized populations, particularly Black, Latinx and Native American communities,” AMA Executive Vice President and CEO James L. Madara, MD, wrote in a letter to Kelly. “However, the ability to accurately track COVID-19 trends and provide equitable public health interventions are dependent on essential changes in data collection at all levels of the government.”

 

Why it’s important: “The AMA believes the provisions in this legislation are an important step forward in helping to improve health outcomes and reduce health inequities,” Dr. Madara explained in his letter.

He noted that, after Hurricane Katrina and during the spread of the H1N1 virus, “minoritized, marginalized and medically underserved populations disproportionately suffered long-lasting financial, environmental and health-related burdens.”

Despite the well-known existence of this disparity, the information needed to address it is lacking. More than 40% of the Centers for Disease Control and Prevention’s (CDC) COVID-19 database does not include basic information on race and ethnicity.

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“These disasters highlight the need for a better understanding of the role played by social determinants of health,” Dr. Madara’s letter states.

“Without accurate data that is representative of all our citizens, we cannot appropriately evaluate the unique challenges facing these communities or utilize scientific methodology to develop evidence-based interventions for protecting the health of those who have historically been neglected in pandemic or natural disaster relief efforts,” the letter adds.

Read why national COVID-19 patient data is vital to fixing inequity.

“It's imperative that the federal government and all agencies collect and make available high-quality data, including racial data, so we can better target resources in the immediate term to save lives while working to prevent disparities in future public health crises and pandemics," said Kelly, who chairs the Congressional Black Caucus Health Braintrust.

A recent study in the CDC’s Morbidity and Mortality Week Report highlights how the Boston Medical Center (BMC) used demographic data to shape discharge decisions and strategies. If a patient was not able to self-isolate, for instance, they may have been kept in the hospital longer or moved to a newly created COVID-19 recovery center. Other strategies included home delivery of groceries and supplying cell phones for follow-up telemedicine visits.

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COVID-19 exposed systemic weak points. How to get it right next time.

“Long-standing systemic health, health care, and socioeconomic inequities and systemic racism, which influence life expectancy, underlying medical conditions, and health care access and utilization, as well as current work and living circumstances are all factors that can play a crucial role in risk for COVID-19 exposure, illness, and mortality,” the BMC researchers wrote.

Patient characteristics associated with illness and clinical severity, such as age, homelessness, and underlying medical conditions “can inform tailored strategies that might improve outcomes and mitigate strain on the health care system from COVID-19,” they added.

Read why targeting COVID-19 inequities requires a data-driven approach.

Learn more: Systemwide bias and institutionalized racism contribute to inequities across the U.S. health care system. The AMA is fighting for greater health equity by identifying and eliminating inequities through advocacy, community leadership and education.

Stay current on the AMA’s COVID-19 advocacy efforts and track the pandemic with the AMA's COVID-19 resource center, which offers resources from JAMA Network™, the Centers for Disease Control and Prevention, and the World Health Organization.

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