CDC data disappearance worries Wisconsin researchers and health officials 

Wisconsin scientists and state officials say they’re worried a sweeping effort to modify the Centers for Disease Control website to comply with President Donald Trump’s executive orders could undermine years of federal data.

Wisconsin health researchers have seen some CDC data disappear and come back online with the website header “CDC’s website is being modified to comply with President Trump’s Executive Orders.” The Trump administration is specifically focused on the president’s orders related to gender, as well as diversity, equity and inclusion, or DEI.

Some CDC sites are back online, with words like “pregnant people” changed to “pregnant women,” NPR reported. 

Other webpages, such as the Youth Risk Behavior Surveillance System, are still missing results. 

“So far, we are still able to access state data because it is not housed on the CDC website. What’s disappeared is that national level data,” said Diana DiazGranados, director of the Better Together project in La Crosse County. The project used the Youth Risk Behavior Survey to inform local organizations about kids’ mental health.

“We’re concerned about any changes that might be made to the survey and what that data will look like,” she said.

The survey informs health officials about things like teen substance use, sexual activity and mental health. It also collects demographic data, like race, sex and grade. 

DiazGranados said the Youth Risk Behavior Survey is crucial for understanding what youth are going through. 

“It’s our largest database that helps us see if youth behaviors, like risky behaviors, are changing over time,” DiazGranados said. 

The survey also helps health organizations and schools understand how different populations are impacted, she added. 

“Youth who identify as LGBT are more likely to be doing less well,” DiazGranados said, as an example. “That allows us as a community to rally around that group of students and target prevention interventions to them based on that information.”

She’s concerned that changes to the survey from Trump’s executive orders could leave questions omitted.

“It is important for us to know what kids are going through,” DiazGranados said. “If we don’t ask, it doesn’t make the problem go away.” 

State health officials use CDC data to track health trends over time

Officials at the Wisconsin Department of Health Services rely on CDC health data to inform the public. 

“Given the importance of this information, we are actively assessing which data and guidance is being removed or updated,” the Wisconsin Department of Health Services said in an email to WPR Wednesday. “We anticipate some of the pages will be republished once those updates are made. Once we have a full understanding of the scope of the changes, we will provide an update on the impact this may have on our public health efforts.” 

Linda Hall is the director of the Wisconsin Office of Children’s Mental Health. She said the CDC’s Youth Risk Behavior Survey is the primary resource her team uses to talk about children’s mental health. 

“We’re really concerned about what’s going to happen to this data source,” Hall said. “Anybody who works in data understands the importance of consistent, reliable data that you have one year after the next.” 

Hall said they use the data to decide where to focus their efforts.

“Especially now, the youth mental health crisis is so wide and so deep that we have to be selective about what we work on,” Hall said. 

A ‘strange haze of doubt and worry’

Wisconsin scientists have also grappled with CDC data disappearance. Some have archived past versions of CDC data, in case it remains unavailable or comes back online changed.

Ben Rush is a data scientist in the Department of Radiology at the University of Wisconsin-Madison. He analyzes CT scans for tissue data to predict patients’ long-term health.

His research also examines where a patient lives and how that could influence their health. He was hoping to compare his CT data with the CDC’s Social Vulnerability Index, which assesses a community’s vulnerability to disasters based on social measures. 

“Things like age, disability, access to cars, are factored in there,” Rush said. “That’s something that we were really interested in seeing because we hope to make sure everyone can have access to high quality care.” 

Last week, he saw the Social Vulnerability Index, known as the SVI, was down. Some pages still haven’t come back.

“I don’t know what will happen with the SVI data going forward,” Rush said. “There’s just a lot of uncertainty.” 

Rush put out a call to other scientists, and they began sharing ways to access archived versions of the site.

“I think scientists, everyone that I have talked to, are in an almost strange haze of doubt and worry,” Rush said. 

Access to public datasets, spanning years like the SVI, are critical for researchers like him, he added. 

“One of the things that I love about the university here, about just the U.S. in general, is our dedication to research and science and innovation,” Rush said.  “And now that is, I feel, questioned a bit.”