Illinois Has Holes In Its COVID-19 Data. Will That Hinder Planning For Future Outbreaks?

Data kept by the state show that in 80% of COVID-19 cases, the patient’s job is unknown — vital to preventing potential future outbreaks.

Rolanda Clark, nurse
Rolanda Clark, a nurse, at a protest in April in front of the Cook County jail. Illinois data show at least 400 correctional facilities workers across the state have gotten COVID-19. But the state's data is incomplete for the work places of most cases. Manuel Martinez / WBEZ
Rolanda Clark, nurse
Rolanda Clark, a nurse, at a protest in April in front of the Cook County jail. Illinois data show at least 400 correctional facilities workers across the state have gotten COVID-19. But the state's data is incomplete for the work places of most cases. Manuel Martinez / WBEZ

Illinois Has Holes In Its COVID-19 Data. Will That Hinder Planning For Future Outbreaks?

Data kept by the state show that in 80% of COVID-19 cases, the patient’s job is unknown — vital to preventing potential future outbreaks.

As Illinois’ economy inches open, public health officials across the state are anxiously monitoring the continued spread of COVID-19, hoping there isn’t a resurgence in cases as people start to venture out for a haircut or a meal on a restaurant patio.

But they’re strategizing somewhat in the dark.

In Chicago, health and government officials do not know the types of jobs those with COVID-19 have in about 90% of the cases the state has tracked. Across Illinois, it’s unknown in almost 80% of cases, according to data WBEZ obtained from the Illinois Department of Public Health.

Experts say tracking where people who’ve gotten COVID-19 live and work — and presumably where they may have come into contact with the virus — is vital to preventing and identifying potential future outbreaks.

Health officials know outbreaks have already happened in places where workers are shoulder-to-shoulder in factories, and in so-called congregate settings such as nursing homes, where aides commonly work in multiple buildings, carrying the virus with them. There have been outbreaks in prisons and homeless shelters and, predictably, in hospitals, where doctors and nurses are treating patients in the throes of a pandemic.

But the problem is, this data is woefully incomplete.

To try to track cases in its infectious disease database, the Illinois Department of Public Health issued a 14-page form that it has asked hospitals to fill out when they identify a patient with COVID-19.

But faced with a cumbersome process in the midst of a pandemic, many hospitals aren’t completely filling out the forms. Then it falls to public health workers, already overstretched and under-resourced, to play catch up with patients to get this information.

The lack of data on who has caught the virus and where they work means public health and government leaders across the state still don’t know the full scope of the pandemic, making it harder to prevent the next potential wave of infections, experts say.

“That really should drive everything we do,” Dr. Wafaa El-Sadr said of knowing more details about who is getting sick. She’s an epidemiologist at Columbia University who is studying COVID-19 in New York City and helping to prevent the virus from spreading in other parts of the world.

“Knowing where new infections are happening, whether they are among essential workers or health care workers, whether they are at certain ZIP codes,” El-Sadr said. “This knowledge is what’s needed in order to know what to do next.”

That includes providing more protective gear to certain types of workers or expanding testing in certain communities, El-Sadr said. Or even planning for who should get a vaccine first, if and when one becomes available.

The form process

After WBEZ reported that COVID-19 was killing black residents in Chicago and across Cook County at disproportionately higher rates, Chicago Mayor Lori Lightfoot underscored just how much more local public health officials wanted to know about who was contracting the virus. She called for hospitals to provide more demographic details about their patients, such as race.

Dr. Jennifer Layden, chief medical officer for the city’s public health department, said the agency is partnering with hospitals to make data sharing easier.

A state public health department spokeswoman said the COVID-19 form should be as complete as possible, but there’s no requirement that every field be filled out. She did not comment on the impact of having so much missing data.

The form feeds into the state’s infectious disease database. Illinois health officials provided a copy of the form, but would not give WBEZ access to the raw data, saying the information isn’t public and citing various health care laws.

The department did provide WBEZ with a snapshot of who is getting sick by gender, race, occupation and living arrangement, such as a home or a prison. But that came with this caveat: There’s a lot of information they don’t have. There’s even more they won’t reveal — if they have the information — such as which specific companies people work at and the communities or ZIP codes where they live.

There were roughly 83,000 COVID-19 cases when IDPH provided this snapshot on May 13. (Illinois has since surpassed 114,000 cases.) In nearly 80% of cases, hospitals or others didn’t list the types of jobs patients have. The state public health spokeswoman said in some cases, that could be because the patient died or the person filling out the form didn’t think the information was relevant, such as if the patient lived in a nursing home and didn’t work.

Here’s what else the data the state provided show:

  • Of COVID-19 cases where occupations are disclosed, at least 5,000 are health care workers who have directly treated patients. This is the biggest known group of workers who have gotten sick. These are nurses, doctors and others.
  • The next biggest group of infected people who have jobs are factory workers, with more than 1,400 identified cases, followed by people who work in hospitals but don’t treat patients, such as security officers and janitors. Food service workers are next, with 673.
  • The construction industry only had 141 reported cases, and there were fewer than 100 reported cases among low-wage workers such as housekeepers and landscapers.
  • The majority of cases are people who live at home. While outbreaks at nursing homes and jails have been well-documented, there have also been at least 399 cases at homes for people who have developmental disabilities.
  • There have been at least nine reported cases at day care centers, 34 in K-12 schools and nearly 40 at colleges and universities.

The state typically learns about new COVID-19 cases when a patient tests positive through a lab test. Then, the provider enters some limited information, including name and address, into the state’s infectious disease database.

Alternatively, the state is trying to get providers to fill out the longer 14-page form online. It includes a lot more detail on the cases, such as what the patients’ symptoms were, if they were on machines to keep them alive in the hospital and who else patients had contact with in the two weeks before they got sick.

Doctors are already adding details about cases in patients’ electronic health records. So filling out the state’s forms could mean they’re manually entering data twice.

In Chicago, the epicenter of COVID-19 cases in Illinois with nearly 40% of the state’s positive cases and deaths, the city’s public health department provided a snapshot about health care workers specifically. A department spokesman said the agency gets its information from the state’s infectious disease database.

Some Chicago hospitals don’t have access to the state database. So they fax the information on COVID-19 cases to the city’s public health department, whose employees then manually enter the data into the state database, said Layden, from the Chicago Department of Public Health.

All of this data entry is time-consuming and can take sometimes weeks or even months, Layden said, adding that the COVID-19 form is just one of many pieces of data hospitals need to fill out during the pandemic. There are also daily reporting requirements, such as how many beds they have open to treat patients.

“There are so many things they have to fill out and submit that they’re being overwhelmed,” Layden said.

And it’s a delicate balancing act. The city doesn’t regulate hospitals — the state does.

Why the data matter

Even some organizations that represent local doctors and nurses who appear to be bearing the brunt of infections don’t know the scope of exposure and illness in their professions.

They told WBEZ that makes it harder for them to understand where to fight for more resources, like N95 masks that provide the highest level of protection against COVID-19, and help each other plan for how to make their clinics safer as they welcome back patients to the office.

Additionally, knowing where someone works or could have picked up the virus instead of waiting to ask the infected person gives contact tracers a head start, said Dr. Rachel Rubin, colead for Cook County’s public health department.

She’s among public health officials around the state who are organizing small armies of tracers to interview people who have come into close contact with those who have tested positive for COVID-19. The county might hire more than 700 for the big effort.

“It takes a very long time and it’s very difficult to do this,” Rubin said of contact tracing.

Chicago plans to create its own workforce of around 600 contact tracers.

The goal in having robust data is to find patterns. And those patterns could help public and private industry plan for the fall or winter, when outbreaks may happen again.

“It helps answer questions that you have now, like did opening the bars have the numbers [of cases] go up,” said Dr. Linda Rae Murray, a longtime public health expert in Chicago. “It helps if things shift. If we open the schools in the fall, we may see a sudden increase in our elementary and high school teachers, for example.”

Layden said it’s been a “significant challenge” to try to get ahead of the virus without a clear picture of who is impacted. Besides not knowing the types of jobs Chicagoans who are infected have, the city is also still missing around 30% of data that would describe patients’ race. COVID-19 impacts black and Latino residents at higher rates than other racial groups.

As the city makes decisions and tries to understand who is at risk, and how patients are becoming sick, “you always are weighted by that question of if the data you have is representative of all that are infected,” Layden said.

For now, Layden said Chicago officials are trying to work with the data they’ve got.

Kristen Schorsch covers public health on WBEZ’s government and politics team. Follow her @kschorsch.