Maine public health experts worry about federal data removed from websites

Public health experts say they are worried about access to important federal health data after agencies removed information about some diseases in the last few weeks.

Rebecca Boulos, executive director of the Maine Public Health Association, which represents public health interests before the Maine Legislature, said she was looking up data on tobacco and cannabis use on the U.S. Centers for Disease Control and Prevention website recently, and it had vanished.

“We rely on data sources to help us understand what’s going on in public health,” Boulos. “If groups of people don’t exist in the data, they are essentially invisible when it comes to figuring out interventions.”

The U.S. CDC compiles data on many topics, including influenza, avian flu, COVID-19, other infectious diseases such as measles and pertussis, vaccination rates, surveys of mental health and substance use, suicides, abortion, and numerous other health data sets.

Boulos said that while the Maine CDC tracks its own data, “we use the national data to put the Maine data into context. We get an idea of where Maine is in relation to the country.”

Some of the data sets that were removed have been restored, apparently after ensuring they comply with President Trump’s executive orders — including orders on eliminating “diversity, equity and inclusion” references on federal websites. Others are still missing.

Some of the datasets that were taken down include survey results for youth and adults on behavioral risks, including substance use and depression rates, HIV data and the Morbidity and Mortality Weekly Report, which highlights and publishes public health research. The MMWR was published this week, but a study about pet cats possibly transmitting bird flu to people, which was briefly part of the report, disappeared, according to the New York Times.

In January, the Trump administration also temporarily paused all health agency communications.

With uncertainty about whether the Trump administration will continue to publish public health data, some organizations are scrambling to capture the data sets in case they disappear entirely. There’s also worry that the Trump administration may stop collecting some data about public health.

“In the immediate term, it creates this distrust in government data,” said Cynthia Cox, KFF vice president and director of the Peterson-KFF Health System Tracker Project, in an interview with the Press Herald. KFF is a national nonprofit health policy organization.

“When the data came back, we had to check to see if anything had changed,” Cox said. “Will this data continue to be available? Will new surveys continue to be updated? They’ve never been politicized to this extent.”

Cox said the COVID-19 pandemic showed how public health data is used in real time.

Cox said public health officials “looked at areas in the country where we would more likely see more patients having serious complications from COVID-19, relative to the number of hospital beds and health care providers in each area,” Cox said. “Then you could see which hospitals were most at risk for overflowing, and react. That’s how you can use data to target interventions to where there is the greatest need.”

And it’s not just responding to crises, Cox said. The data can help determine where to provide more cancer screenings, and where to put more effort into addressing obesity.

The concern about data comes as the Senate has yet to vote on whether to confirm Robert F. Kennedy Jr. as commissioner of the Department of Health and Human Services.

The Maine CDC works closely with the federal government on data and is “actively monitoring the situation and assessing access to various platforms and data sources,” said Lindsay Hammes, the agency’s spokesperson. “(We) expect things could remain in flux as the federal administration settles in and (Kennedy) goes through the confirmation process.”

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