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Why COVID Data Doesn't Always Show The Full Picture

Stock image of a medical worker administering a COVID-19 test through the window of a vehicle
RyanKing999 via iStock
A patient's demographic data is usually collected when they get tested for coronavirus — though not always completely.";

It’s been known for months that the coronavirus is disproportionately impacting people of color. In Utah, the Latinx population is by far the hardest hit. They make up nearly 41% of the state’s cases, yet only 14% of the population. 

But new federal data, revealed publicly for the first time after the New York Times sued the Centers for Disease Control and Prevention, provides a clearer picture of those disparities nationwide, such as how pervasive they are not just in major cities but across the country. 

The data, however, is far from complete. The Times reported race and ethnicity information is missing from more than half the cases, as are other important details — such as how the person might have become infected.

That presents challenges to public health officials tracking the disease, for whom data is a crucial part of their response to any disease outbreak, said Rachelle Boulton, who oversees electronic data collection with the Utah Department of Health. Knowing where a patient lives and works helps health departments see where and how people are getting infected, and who should quarantine. 

“It’s incredibly challenging when we receive test results without that information, because we can't start an intervention if we don't know how to contact a patient,” Boulton said. 

She said it also burdens public health departments and the health care industry at large, both of which then have to track down patient information.

According to the CDC, 90% of Utah's data had race and ethnicity information. But Boulton said state and local health departments can still struggle to gather everything they need, in part because the data goes through so many layers. 

It can get lost, she said, if a clinician doesn't provide it to testing labs. Or, a lab might receive the information but not enter it into their system. Or, as is the case with some testing locations and smaller clinics, clinicians may be filling out documents with a pen and paper. 

“It's a dance,” she said. “It requires everyone to do their part to make sure that that data gets sent all the way to public health in a timely, complete way.”

She said another challenge is keeping up with the urgency and sheer volume of patients during the pandemic, even if health departments are using a process similar to what they’d normally use to track other communicable diseases.

The magnitude of the coronavirus’ impact on society has also meant that many more people than usual are interacting with public health departments. That might be scary for some people, said UDOH public information officer Jenny Johnson. 

Johnson said people might be hearing about contact tracing for the first time, and may not trust public health departments with sensitive info.

“We really need the public to understand why contact tracing is important and to not be afraid of it,” she said. “We are never going to share that information with organizations that some communities are really fearful of.”

She said the information is protected by law, and intended to keep people safe, by better understanding the virus. 

“By telling public health where you've been and who've been around, that allows us to help stop the spread of this disease and make sure that other people aren't infected,” she said.

Jon Reed is a reporter for KUER. Follow him on Twitter @reedathonjon

Jon reports on quality of life issues, education and the economy
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