Five months into the US outbreak of COVID-19, we are still missing too much information.
States and territories don’t have enough federal guidance on how to report COVID-19 data, so they do it in inconsistent ways that leave many basic questions unanswered. Better data could help us answer some of these important questions, like:
Which events lead to big outbreaks? Having Zip Code or neighborhood-level data would help us see the impact of mass gatherings like protests and rallies. Some places like Minneapolis, New York City, and Tulsa do report that information, but we don’t have it for Atlanta, Louisville, or Phoenix—and many other US cities.
How many people with COVID-19 are seriously ill, and where might hospitals be filling up? We can’t tell how many people are hospitalized with COVID-19 nationwide. In four states—including Florida, where cases have been rising sharply and as of June 29th, more than 75 percent of adult ICU beds are occupied—we don’t know how many people are currently hospitalized with COVID-19. Public health departments aren’t reporting it.
Which groups are most affected? Current COVID-19 data shows large disparities across race and ethnicity. For example, Black people make up only 13 percent of the US population, but account for over 20 percent of COVID-19 deaths—at least when race is known. In states like Arizona, Virginia, and Washington, early data shows that Indigenous communities in Arizona or Hispanic or Latinx communities in Virginia and Washington are being disproportionately harmed by COVID-19. States haven’t reported race and ethnicity data for at least a quarter of all cases, so there’s a lot we still don’t know about the figures.
Around the country, states and counties are making decisions based on incomplete data. There’s so much we don’t know—and these critical holes make it harder to see which groups are most affected, where we need more hospital beds, testing, and so much more. The new federal rules might change that, but not without on-the-ground work from state and local governments.
More detailed COVID-19 data is on the way
Starting August 1, 2020, new guidance from the US Department of Health and Human Services (HHS) will require that all US testing sites collect and report more information about the people they test—including age, race and ethnicity, sex, and Zip Code. For people being tested for the first time, we’ll also know:
whether the patient has been hospitalized
whether they are a healthcare worker
whether they’re being cared for in a group setting, like a long-term care facility or group home.
This would give us more detailed and consistent data than ever before. Public officials need this information to guide contact-tracing programs, direct emergency resources to the right places, and boost testing capacity in hotspots and vulnerable communities. This detailed data is also extremely important for policymakers and the public to understand and respond to racial inequality in our healthcare system. As Ibram X. Kendi, Director of the Boston University Center for Antiracist Research, wrote in early April, “If we can’t see racial disparities...we can’t eliminate racist policies, or replace them with anti-racist policies that protect equity and life.”
The new HHS requirements are a step in the right direction, but they only strengthen the first link in the chain of COVID-19 data reporting: the labs that perform the tests and record the data. Right now, labs report the data to state and local health authorities, who ultimately report data to the CDC. These health authorities answer to state governors and their administrations, who influence decisions about what data will be made public. If we want to be sure the data is actually being seen and used by all decision-makers, we need our elected officials to advocate for—or at least agree to—getting this data into the public view.
Public data may not make it to the public without your help
Local newspaper and television reporters have been the unsung heroes of COVID-19 data transparency in the United States, nudging states and counties to publish more data and holding them accountable when they take important information offline or publish data in misleading ways. We know that journalists and the public can do so much to keep pressure on elected officials to release this new data.
Here are some questions you can ask your officials:
How are you getting ready to manage the new data from laboratories? State and local public health offices are already stretched thin and will now need to do even more work to meet these guidelines. Unless governments recognize and resource the work ahead, we fear we’ll blow past August 1 and still not understand our collective challenge.
Will you make the new data specified in the HHS requirements public? If not, why not? The HHS requirements focus on data collection, but don’t specify whether or how that data will make its way to the public. We’d like to see states publish all demographic COVID-19 data so that researchers, journalists, and the public can be as fully informed as possible.
Will you attempt to report race and ethnicity figures using categories that align with federal standards? States are classifying race and ethnicity for deaths and cases in a variety of ways. Officials can enable cross-state comparisons and national statistics by aligning public dashboards with long-established federal standards for categorizing racial and ethnic groups. It is our hope that HHS will guide labs to follow these standards as they begin reporting more demographic data for COVID-19 tests, but we won’t know for sure until we begin to see the data—which means this is a crucial point to raise early in the process of integrating the new data.
Will you break out data for at-risk populations, such as healthcare workers or those who live and work in congregate care facilities? If not, why not? The new HHS requirements (see this FAQ) should improve our understanding of COVID-19’s effects on certain at-risk groups. We hope state and local officials will break this information out for the public. At the same time, we also need to see states report on other high-risk groups—such as incarcerated people and essential workers—who are not included in the new HHS requirements.
What comes next
In partnership with other organizations working on COVID-19 data, The COVID Tracking Project is working on a detailed report about COVID-19 data gaps and inconsistencies. We’ll release it in the coming weeks, along with a cookbook-style set of data standards to help states standardize public reporting of COVID-19 data—which, in turn, makes it possible to produce more accurate national statistics and compare information across states and regions. We’ll also be publicly tracking each state’s progress in reporting the new data.
Local reporters and concerned members of the public are our best allies in making sure that state elected officials use this newly available data to keep all of our communities better informed and better protected. To keep up with what we’re seeing in COVID-19 data and help us push for greater transparency, sign up for our email updates.
Michael Parks is a journalist and communications specialist with a background in energy research and policy.
Nicole Rivera is a policy and public affairs professional who has focused on developing creative and strategic ways to communicate complex issues with clarity.
More “Testing Data” posts
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States provide COVID-19 data in a variety of sources and formats. To ensure our data is as accurate and consistent as possible, we spend a lot of time looking at these sources to make sure that we’re capturing the most data possible for each state, while maintaining high standards of data quality and integrity. Today, we’re publicly releasing a detailed set of notes on the sources of all our data points.
Many states have moved toward greater transparency about their test data reporting methods, and we’re making changes to better represent what they publish. We’re also introducing a “new” way some states are counting tests—one we think all states and territories would be wise to embrace.