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Since March 2020, when the first case of COVID-19 was reported in Onondaga County, the county’s health department has been tracking and reporting confirmed cases of COVID-19. But roughly one-fifth of all confirmed cases in Onondaga County have no associated race or ethnicity data.

Instead, they have been labeled as “unknown.”

The Onondaga County Health Department regularly updates its COVID-19 dashboards with demographic data of people who test positive for the virus. The dashboard data for age and gender are almost entirely complete, with no missing data for age and only 0.3% of data labeled as “unknown” for gender.

But 18.2% of confirmed COVID-19 cases lacked race data, and 20.8% lacked ethnicity data in the county.

Tawny Hawthorne | Asst. Digital Editor

In the city of Syracuse, the rates of unknown data for race and ethnicity exceeded that of the county. Ethnicity information was labeled as “unknown” for 24.2% of confirmed COVID-19 cases, and 22% of cases do not have associated race data.

The Onondaga County Health Department faced two key obstacles that limited its ability to collect this race and ethnicity data, said Melanie Drotar, Onondaga County public information specialist, in an email.

Either the department was unable to contact the person who tested positive after several attempts, or the individual “declined or was unable to provide” information about their race or ethnicity when contacted by the department, Drotar said. The health department checks other sources for missing demographic information to complete the data as much as possible, she said.

Onondaga County is not unique in its limited race and ethnicity data of those who tested positive for COVID-19, said Aviva Schwarz, data editor at the Boston University Center for Antiracist Research, which publishes the COVID-19 Racial Data Tracker.

Only a few weeks into the project, which was published in collaboration with The Atlantic’s COVID Tracking Project, Schwarz and her colleagues recognized that race and ethnicity data was being severely underreported nationwide.

“Toward the end of March (2020), the data that was coming in was missing race and ethnicity data pretty much everywhere, and none of the 50 states were providing any information on the race and ethnicity of people being diagnosed with or dying from COVID,” Schwarz said. “And so, an advocacy effort began around that lack of data to really push the states to start reporting race and ethnicity data.”

By early April of that year, the majority of states had begun to publicly share this data, which Schwarz and her colleagues could collect and track.

This data is far from complete, as many states have only reported race and ethnicity data for a fraction of their total COVID-19 cases. Over the course of the project — which officially stopped tracking data on March 7, 2021 — researchers found that information about people’s race was missing in 32% of cases, and ethnicity data was not reported for 40% of cases, Schwarz said.

New York stands alone as the only state to not publicly report any information about individuals’ race or ethnicity for confirmed COVID-19 cases. The state does report this data for hospitalizations and deaths relating to the virus, though, Schwarz said.

The New York State Department of Health declined to comment about the state’s decision to not report this data.

“In general, I would say it’s not a lack of will on the part of the state. It’s a lack of availability of the data that they need to report,” Schwarz said. “Maybe the data that’s coming in from medical providers is incomplete. There’s also issues with case investigations taking time, so you see the most recent cases missing that information and filling it in over time.”

In the medical field, the majority of demographic data is self-reported, said Lawrence Schell, professor at SUNY Albany and director of the university’s Center for the Elimination of Minority Health Disparities. Underreporting of patients’ race and ethnicity is a “classic issue” in medicine overall and not just present with COVID-19 data, he said.

Some individuals may provide inaccurate contact information to the medical provider they visit because they don’t want to be located, Schell said. For example, people living in the U.S. without legal permission or people with outstanding debts may wish not to give personal info. And doctors rarely push their patients to provide their complete demographic information, he said.

“If you’re trying to get people tested (for COVID-19), you don’t want to require them to reveal information they don’t want to reveal, because it will put them off of doing what you want them to do,” Schell said.

In Fulton County, Georgia, approximately one-third of reports on COVID-19 cases lacked race and ethnicity data when ARCS scholar Katie Labgold and several others started research on the completeness of COVID-19 data in the county, Labgold said in a release from the ARCS Foundation. As of Tuesday, about 8% of all data from Fulton County COVID-19 cases lacks race and ethnicity data, and 13% of the data from the past two weeks lacks race and ethnicity data, according to a June 11, 2021 report from the Fulton County Board of Health Epidemiology.

The ARCS Foundation recently helped fund a study at Emory University in which researchers took the data that lacked race or ethnicity information and predicted the person’s race or ethnicity based on their surname and residence.

The Emory study found that when these individuals were included, the disparity in positive COVID-19 diagnoses between Black or Hispanic people and white people was “30 to 60 percent greater than the disparity observed when cases missing race/ethnicity data were excluded from the analysis,” the ARCS Foundation wrote.

COVID-19 cases lacking race and ethnicity data aren’t excluded from Onondaga County’s reporting, but labeling this missing data as “unknown” can still obscure the ability to accurately determine racial disparities in people who have tested positive for the virus, Schwarz said.

These gaps in the data can also prevent medical researchers or government officials from identifying which groups of people are in need of the greatest amount of resources, she said, which makes it much harder to justify health interventions designed to address inequalities.

Despite rifts in the data surrounding confirmed COVID-19 cases in Onondaga County, the information about the race of people being vaccinated against the virus is far more complete, with only 6.3% of individuals vaccinated by the health department categorized under an “unknown” race. The NYSDOH is also tracking this data for statewide vaccinations.

Tawny Hawthorne | Asst. Digital Editor

For Denise Welch, associate program manager of the National Black Leadership Commission on Health, getting the greatest number of people in Onondaga County vaccinated is the current priority. Some of the missing race data for vaccinations likely stems from fear among some people of color about providing their demographic information, Welch said.

“People weren’t really willing to give their insurance information because they were worried whether or not (a bill for the vaccine) was going to get mailed to their insurance,” she said. “And some of the misconceptions we’ve heard around the vaccine is that there are two different doses: one for people of color and one dose for their Caucasian counterparts. Those are just myths and misconceptions.”

The task force aims to collect and report as much information as possible surrounding race and ethnicity of those vaccinated, Welch said. At the moment, the most pressing issue for Onondaga County and New York state is to increase the number of people vaccinated — especially people of color, she said.

The data that is available emphasizes the need for more outreach efforts in communities of color in the county, Welch said. Of roughly 56,000 Black residents in Onondaga County, only 8,000 have been vaccinated against COVID-19, she said in an interview on May 21.

“If anything, I think uncertainties in the data are making people go harder in communities of color, because the numbers are very low as far as African Americans being vaccinated,” Welch said. “There’s always going to be this extra concern or effort, because, whether the data is accurate or inaccurate, it definitely tells us that we need to do more work in our Black communities.”

Published on June 11, 2021 at 8:33 pm

Contact Gillian: gifollet@syr.edu