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Reporting COVID-19 data is vital. It’s vital for reporting accurate case numbers and outbreaks. It’s vital for identifying the most vulnerable demographics. It’s vital for understanding which treatments are most effective. And it’s vital for keeping hospitals open during the pandemic.

In late September, the Trump Administration threatened to cut funding to hospitals that don’t report COVID-19 data to the U.S. Department of Health and Human Services (DHHS). Until July, hospitals were sending this data — which includes the number of ventilators, patients in the ICU, and PPE supplies — to the Centers for Disease Control. Reporting responsibilities have since shifted to DHHS. For the week of September 14, though, only 24 percent of hospitals reported their daily metrics.

While necessary, reporting all the data all the time is difficult. If the person responsible for reporting is out sick, for example, the hospital lags behind. When this happens or if there are no COVID-19 patients to report, the hospital may be flagged as “noncompliant.” If a hospital isn’t compliant after several warnings, the Centers for Medicare & Medicaid Services can cancel their provider agreement — a funding loss that, even temporarily, could mean shutting down.

“The pandemic has exposed, more than anything else, the importance of data,” says Ashok Krishnamurthy, deputy director of RENCI. “Data are what will help you get a fuller picture of what works and what doesn’t.”

Located at the University of North Carolina at Chapel Hill, RENCI is a collaboration among UNC, N.C. State University, and Duke University. The research institute fosters data science expertise, advances software development tools and techniques, and establishes sustainable business models for software and services.

Krishnamurthy is leading a team conducting a case study documenting the flow of data produced during the pandemic. They hope to compile a paper that includes information about reporting, analysis, availability, sharing, coordination, modeling, and more. This will serve as a guide for North Carolina data collection.

This project is unique for Krishnamurthy and others at RENCI who are used to working with data that’s already been collected.

“Here, I’m trying to understand how the data is collected, transmitted, and reported. It’s a different nature,” he says. “We are learning a lot and hope that policy- and decision-makers can make use of it.”

To do this, Krishnamurthy and his colleagues are interviewing people from the North Carolina Department of Health and Human Services (NCDHHS), UNC Health, the UNC Gillings School of Global Public Health, the UNC School of Medicine, Duke Health, the Duke Clinical Research Institute, and other health providers. They want to know where the data is coming from, how it’s being collected and interpreted, and what data is being missed, among a myriad of other questions.

“Health data is complex and many-faceted,” says Krishnamurthy. “All hospitals do not collect or label data in the same way, so there can be miscommunication in understanding what is requested and in interpreting what is delivered. In many cases, things like test results are handled manually, meaning they’re faxed over and then re-keyed, leading to potential delays and errors.”

Jessie Tenenbaum, the chief data officer for NCDHHS, told Krishnamurthy that when the pandemic began, her team was dealing with a lot of manual data reporting methods, which prevented them from gathering the data quickly — a huge problem as the virus was spreading rapidly. In response, NCDHHS began developing electronic reporting methods to improve efficiency, speed, and accuracy.

“This is a case of trying to build the airplane while you’re flying it,” Krishnamurthy says. “You’re in the middle of a pandemic and trying to develop more efficient and accurate methods of data reporting while its going on.”

Electronic reporting doesn’t solve everything, though, Krishnamurthy points out. Oftentimes, it creates new problems such as false reports caused by coding glitches, the need for more staff training on electronic reporting practices, and privacy concerns. But it’s a step in the right direction for collecting better information faster.

Like many projects across the nation, this one is quickly revealing gaps in the data collection system — which Krishnamurthy wants to see strengthened before the next public health crisis occurs.

“Pandemics don’t happen every year — at least, we certainly hope not — but this is forcing us to build better processes and procedures. It is helping us set up more, long-term, everyday systems and methods of data collection.”

Ashok Krishnamurthy is the deputy director of RENCI. He is also a research professor in the Department of Computer Science within the UNC College of Arts & Sciences and an adjunct instructor within the UNC School of Information and Library Science.

This project is supported with funding from the N.C. Policy Collaboratory, which was established by the N.C. General Assembly in 2016 to apply expertise within the UNC System to practical problems faced by the state and local government.

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