(TNS) — Late last Friday, the architect and manager of Florida's COVID-19 dashboard — praised by White House officials for its accessibility — announced that she had been removed from her post, causing outcry from independent researchers now worried about government censorship.
The dashboard has been a one-stop shop for researchers, the media and the public to access and download tables of COVID-19 cases, testing and death data to analyze freely. It had been widely hailed as a shining of example of transparency and accessibility.
But over the last few weeks it had "crashed" and gone offline; data has gone missing without explanation and access to the underlying data sheets has become increasingly difficult.
The site was created by a team of Florida Department of Health data scientists and public health officers headed by Rebekah Jones. She announced last week her removal as of May 5 in a heartfelt farewell note emailed to researchers and other members of the public who had signed up to receive updates on the data portal.
Citing "reasons beyond my division's control," Jones said her office is no longer managing the dashboard, is no longer involved in publication, fixing errors or answering questions "in any shape or form."
She warned that she does not know what the new team's intentions are for data access, including "what data they are now restricting."
"I understand, appreciate, and even share your concern about all the dramatic changes that have occurred and those that are yet to come," she wrote.
"As a word of caution, I would not expect the new team to continue the same level of accessibility and transparency that I made central to the process during the first two months. After all, my commitment to both is largely (arguably entirely) the reason I am no longer managing it."
Jones signed off, "It was great working with you guys. Good luck, and stay safe."
Jones did not respond to emailed requests to comment and the Department of Health did not reply to inquiries from Florida Today regarding Jones' removal and access to data.
But researchers who have relied on unobstructed access to underlying raw data said they interpret Jones' removal as a clear indication of government censorship of science.
"We would not accept this lack of transparency for any other natural disaster, so why are we willing to accept it here?" said Jennifer Larsen, a researcher at the University of Central Florida's LabX.
Jones' removal and changes to the dashboard access is especially unusual given that the dashboard was lauded in April on CBS' Face the Nation by Dr. Deborah Birx, a top official of President Donald Trump's coronavirus task force.
"If you go to the Florida Public Health website on COVID, they've been able to show their communities' cases and tests district by district, county by county, ZIP code by ZIP code," Birx said. "That's the kind of knowledge and power we need to put into the hands of American people so that they can see where the virus is, where the cases are, and make decisions."
Jones was also profiled by Esri, the software company that provides the product used to build the interactive visualization.
"Jones packaged data for academic and private researchers who are also creating models to help predict and explore impacts," the company wrote.
"If you look at our data services, there's a lot of publicly available data, because it's critical information," Jones said at the time. "The efforts in the academic community to do serious data modeling are crucial right now."
Data access has not worsened further, yet, but researchers are sounding the alarm in response to Jones' email.
Restricting the data, UCF's Larsen said, is the equivalent of cutting off hurricane forecasts as a storm approached.
"It's all of us being denied access to what we need to know to be safe," she continued, adding "it's just absurd that this is being treated differently than any other threat to Floridians."
Professor Ben D. Sawyer, who is the director of LabX at UCF — a team of researchers, data scientists and engineers working to understand patterns in Florida's COVID-19 data that have practical applications — fears the data will become less available.
"The ability of scientists to help is directly related to how much access we're given to data," he said, warning that with less raw data, scientists will be able to produce less accurate, less useful work.
There's also "the worry that the scientists within government who can access the full data are being actively censored," he said."That's a real worry."
When Sawyer and Larsen tried requesting the previously available underlying data, DOH officials said that because the data are "provisional" no such requests would be considered until May 2021.
Yet the state regularly publishes provisional data, including for infectious diseases such as influenza.
"Transparent, unfettered access to valid and granular data is central to effective disease control and prevention," wrote Jay Wolfson, a Senior Associate Dean at the University of South Florida's Morsani College of Medicine.
While Wolfson does not advocate for data to be released in an uncontrolled manner, he said limitations on raw data or "provisional data" should simply be qualified. "Good science does this routinely."
For Wolfson there are at least two explanations behind restricting data. One is if the data are "too flawed" to be useful. The other "is that the data reveal information that could be disturbing or contrary to stated narratives."
"Either case poses dilemmas for the very way the public's business is being conducted. And while economic measures are vitally important to the health of the state, the health of the people of the state ultimately determines the state' economic success," Wolfson wrote.
Asal M. Johnson, an assistant Professor of Public Health at Stetson University, has also been frustrated with decreasing data access.
"If we can not download data, further analysis becomes increasingly difficult as you can not easily calculate incidence and prevalence rates. This type of independent research by universities is critical as it can help tax payers and residents to make informed decisions regarding their actions," she wrote in an email.
Johnson also was dismayed that racial and ethnic data has been consistently excluded from Florida's line listing of cases. Such data was reported by medical examiners, but that data table has also been censored by the Department of Health.
Citizens have a right to the data, Johnson said, and making it less accessible "further complicates the control of COVID-19."
As to why the DOH is restricting access to data at this time, Johnson could only speculate: "To undermine evidence-based decision making to prioritize (the) economy."
"However, they are pretending that public health is what has damaged (the) economy. They are getting it wrong; the economy is damaged because we ignored evidence to protect public health," she wrote, adding "They think they can save their own political interest by restricting information."
"If the governor and his team are not pleased with speculations like this, then they have no choice but being transparent. We, as Florida residents, have right to have access to clear and easy to analyze information."
Sawyer at UCF tends to agree.
"The worry is that Florida is open. And if that goes poorly, they don't want data available that shows it is in the process of going poorly. I don't know that that's true, but that is my worry."
For Larsen, if the politics of Gov. Ron DeSantis' reopening Florida are at play, it's a no-win situation.
"The virus doesn't really give a damn if you hide its numbers."
©2020 The News-Journal, Daytona Beach, Fla. Distributed by Tribune Content Agency, LLC.