MARY LOUISE KELLY, HOST:
OK, lots of us do this. We want to know what's going on with COVID where we live, so we pull up a COVID dashboard online. States have them, counties have them. They tell you about new cases, how many people are in hospitals. The data is supposed to get pulled together by the CDC, the Centers for Disease Control and Prevention - except it's not. Austin Fast of NPR's investigations team reports.
AUSTIN FAST, BYLINE: So for those of us who track data about COVID, there's this mystery. We know there have been 38 million confirmed cases across the country, but when you want to dig into the details, you can't find them. They're missing for 7 million people.
JOSH ZARRABI: When you go and you look at the map and you see Texas in gray and you see there's no data coming out of Texas.
FAST: Josh Zarrabi tracks how diseases affects different races and ages with Atlanta's Morehouse School of Medicine. His online maps have big gray spaces in states without good COVID data.
ZARRABI: I think a lot of Americans to be unhappy about that because we're missing a huge piece of the puzzle here.
FAST: Those puzzle pieces help the CDC put together the big picture of COVID, things like race, gender and age, symptoms and whether the patient was hospitalized or died, all details that can help the CDC more accurately track who's getting COVID-19 and better protect at-risk groups. It's not required, but most states send that information to the CDC. A handful have not - Texas, Missouri, Louisiana, West Virginia and Wyoming, among others.
NANCY KRIEGER: That is ludicrous. It is shameful. It is wrong.
FAST: Nancy Krieger studies health equity as an epidemiologist at Harvard University.
KRIEGER: You need good data to do proper planning to understand what the risk is, how the risk is changing.
FAST: At the CDC, Paula Yoon is the person who does that planning. Her team watches about 120 diseases, including COVID. But important details for 1 of every 5 reported COVID cases are completely missing. Their job would be simpler if they just had that data.
PAULA YOON: Yes, we would be in a much better place. It's not because the states are not sharing those data with us. It's because the states don't have the data themselves.
FAST: There are plenty of reasons why. For one, counties don't have the money to upgrade the tech they need to track diseases. Ideally, counties would enter it once and it would automatically show up for the state and CDC. But near Kansas City, Mo., like many other places, workers manually copy and paste data field by field, and hospitals fax records to county health departments. Disease prevention manager Chip Cohlmia jokes that health departments keep fax machines alive.
CHIP COHLMIA: It's like having an old car and you're needing to push the car to like a hundred miles an hour, but, you know, you haven't changed the oil. You haven't checked the tires.
FAST: There's another challenge. Just like the feds can't always mandate what states must do, states can't always tell counties what to do or even want to.
DIANA CERVANTES: I wouldn't touch that with a 10-foot pole.
FAST: Diana Cervantes teaches at the University of North Texas. She used to supervise 49 counties for the Texas State Health Department. She says the state prefers not to dictate how counties gather data.
CERVANTES: We don't want to start getting in power struggles with the locals.
FAST: And county leaders can do whatever they want. In Ellis County, near Dallas, Todd Little is in charge. And earlier this year, his staff was overwhelmed, trying to keep up with all the cases.
TODD LITTLE: At this point, we're ready to move on with our lives and experience the freedom that all Texans get to experience on a daily basis. We're ready to move on.
KRIEGER: We should have these data at this point.
FAST: Epidemiologist Nancy Krieger.
KRIEGER: The answer to having not good enough data is to make it really public that it's not good enough and to figure out, how do you make it better?
FAST: Texas plans to get whatever case data it has to the CDC's system in October. In Missouri, they expect a fix by late September. Texas has over 3 million cases to submit, and a handful of other states each have hundreds of thousands to work through. As COVID surges again, their to do list will just keep growing.
Austin Fast, NPR News.
NPR transcripts are created on a rush deadline by Verb8tm, Inc., an NPR contractor, and produced using a proprietary transcription process developed with NPR. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of NPR’s programming is the audio record.