Former CDC chief Tom Frieden says states should make more COVID-19 data easily accessible

To get a better handle on the COVID-19 pandemic, every state in the country should be providing more data, Dr. Tom Frieden, former director of the U.S. Centers for Disease Control and Prevention, said Tuesday.

Frieden is now president and CEO of Resolve to Save Lives, an initiative designed to prevent epidemics and cardiovascular disease, which recommended Tuesday that states release 15 categories of information deemed "essential" to understanding the pandemic.

The categories include things like a rolling average of new cases and deaths, hospitalizations per capita, testing turnaround time, number of contacts of infected people traced within 48 hours, and percentage of people wearing masks in indoor settings such as stores and on mass transit. No state provides all 15 categories of data, only 40% of essential data points are being monitored and reported publicly, and half isn't made public at all, Frieden said in a video call with reporters. 

"We're flying blind on the risk and effectiveness of the response," Frieden said in a prepared statement. "Data are inconsistent, incomplete and inaccessible."

Right now, for example, there are not enough tests for everyone who needs or wants one. Frieden said state governments should "be frank about that" and prioritize testing for vulnerable populations, like hospitalized patients, people who work in meat processing plants, and those in nursing homes, prisons and homeless shelters.

"That's the kind of meaningful metric that can help us get ahead of the virus," he said, "not just 'oh we're going to test another 400,000 so we can say we tested another 400,000.'" 

The federal government should have required this data months ago, he and others on the call said, but in the absence of national leadership, Resolve to Save Lives decided to step into the void.

"With clear guidance, we can understand our risk better and improve our response rapidly," Frieden said. "This information was obtained with taxpayer dollars and we should demand that we have access to the information...on performance and risk."

Dr. Georges Benjamin, the executive director of the American Public Health Association, who was also on the call, said uniform and consistent data would provide a "road map" for measuring success. "We're trying to give a group of metrics that when taken as a whole give you a real picture of whether or not we're getting our hands around this epidemic."

If Arizona had been keeping data on COVID-like illnesses in late May, for example, it would have gotten an early warning that its cases were about to increase dramatically, said Dr. Cyrus Shahpar, director of the Prevent Epidemics Team at Resolve to Save Live. 

Benjamin added that he wished this data collection had been started in March. "We're way behind the curve," he said. But put in place now, the metrics will eventually provide a better picture of the pandemic in the United States, and guide decisions to help combat it.

Individuals also need this information to make good decisions, said Caitlin RIvers, an epidemiologist and senior scholar at the Johns Hopkins Center for Health Security, who was also on the call. "The more information we can get out to the public, the better we will be able to do on both an official and individual level," she said.

Frieden said the CDC made some mistakes in fighting Ebola, when he ran the agency, but because data was made available, those mistakes were identifiable and fixable. 

Data has to be available to inform decision making, Benjamin said. "What gets measured, what gets seen, gets done," he said. "Advocacy groups can add political pressure, resource allocators can figure out where to put the money. The media can hold us accountable."

All the speakers also reinforced the importance of increasing funding for the CDC and supporting the experts who work for government – in an implied slap at the current administration, which has often overlooked its own experts.

"I still trust the CDC," Benjamin said. "They haven't stopped being smart. They haven't stopped being innovative. They've been silenced."

States shouldn't be worried that making COVID-19 data accessible will make them look bad, Frieden and the others said. "Bad news does not get better with time," Benjamin said. "This is not an issue of personal pride. These numbers save lives. Making them public saves lives."

Contact Weintraub at kweintraub@usatoday.

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