The pandemic made open information larger than ever. Nevertheless it’s nonetheless fairly messy.
Written by Benjamin Freed
When the coronavirus pandemic hit the United States last March, many governors, mayors, health directors and other officials promptly armed themselves with whatever numbers they could collect about tests, hospitalizations and deaths.
Daily press conferences became dates for banned populations turning to briefings from New York Governor Andrew Cuomo, whose neatly crafted slideshows later earned him an Emmy, or Ohio Governor Mike DeWine, whose daily appearances were labeled “wine” with DeWine. “
However, as the continued broadcast of the latest COVID-19 data spawned a nation of chair epidemiologists, problems quickly became apparent in the numbers and types of information reported, exposing the need for state governments to step up their data collection and sharing efforts manage their ways through the health crisis.
Almost a year later, every state has expanded its supply of coronavirus data, but efforts in many places remain incomplete and inappropriately across state lines, even as the United States steps up its mass vaccination efforts. Data and health experts say the errors stem from a variety of issues, including a lack of data related to race and ethnicity, elected officials politicizing the numbers, and a lack of national standards.
Just as the demands of remote working and digital administration have sharpened the profile of government IT, the continued need for accurate information has increased the role of data operations.
From a couple to 50
Prior to the pandemic, “most governors didn’t discuss data,” said Tyler Kleykamp, former Connecticut state chief data officer. And if so, he said, then it was more related to issues like criminal justice or opioid addiction. COVID-19 hit a switch.
Tyler Kleykamp
“Soon every governor had a daily press conference with data,” said Kleykamp, who now heads the State Chief Data Officers Network, a think tank for government data leaders at Georgetown University.
And as elected leaders delivered the latest grim news daily, traffic to the states’ open data sites soared. Kleykamp said many states’ data portals had more users last April than they recorded annually.
As the crisis deepened, so did the types of data that needed to be collected, cataloged, and shared. Initially, according to Kleykamp, most states focused on testing and hospital capacity, with health departments taking the lead. However, when facilities such as expanded unemployment insurance and food aid came into force, the data officers became much more involved, as data on these programs had to be integrated between the state government authorities.
Kleykamp said states that already had solid data sharing guidelines, like Indiana and North Carolina, were able to move forward faster than others.
“We miss important aspects”
But it didn’t take long for cracks to appear, especially with regards to coronavirus testing, for which every state, hospital, and private laboratory had different standards, with very little guidance from the federal government. Dr. Joshua Sharfstein, vice dean of public health and community engagement at Johns Hopkins University’s Bloomberg School of Public Health, told StateScoop that the lack of oversight that could have given officials more “consistency and timeliness of core actions” was huge frustrating.
“In terms of data, one of the biggest challenges was that there were no national standards,” he said.
Dr. Joshua Sharfstein (Chip Somodevilla / Getty Images)
Sharfstein, who is also a former Maryland Secretary of Health and deputy commissioner for the U.S. Food and Drug Administration, said states have been very inconsistent in tracking data that could vastly improve the response to COVID-19, especially in Regarding race and ethnicity, if the disease is known to disproportionately affect Black and Hispanic people.
Bad data would have dire consequences.
“We don’t know exactly what is happening. We don’t see what works and what doesn’t. We miss important aspects of the crisis. “
Several high-profile third-party efforts have been made to create nationwide COVID-19 databases. But Sharfstein said these projects, including one developed at Johns Hopkins, have to pull together sets of state data that don’t always match. Others, like the COVID Tracking Project led by Atlantic journalists, manually update the numbers by visiting government websites on a daily basis.
Still, resources like the Johns Hopkins portal and the COVID Tracking Project have been a boon to public understanding of pandemic-related data, Kleykamp said, as have many of the dashboards that states have created to show top-line numbers that are easier to digest for everyday residents.
“I think you had people with the skills to work with raw data. Now you have a whole audience of interested people who are not data scientists or tech geeks,” he said. “The term art is human and machine-readable.”
While organizations like Johns Hopkins and the COVID Tracking Project are aggregating data from various sources and offering deep dives, government dashboards provide a “10,000 foot view”.
“When we share information with the public, it is amplified. You have to meet the needs of different users and make sure it is not just open data or dashboards, but both,” he said.
Data is often politicized
However, the dissemination of data and analysis related to the pandemic has also been riddled with allegations of political interference since the beginning of the crisis, with some figures hidden from the public and data officers ending up in feuds with government leaders.
In May last year, as the coronavirus visibly raced through meat packers in northwestern Iowa and sickened thousands of workers, Governor Kim Reynolds’ government put in place a policy that outbreaks in meat packers and other businesses should only be disclosed if specifically requested by the media .
More recently, Cuomo has been accused of downplaying the impact of the pandemic on the state’s nursing homes in New York. Attorney General Letitia James released a report last month that increased the number of deaths in off-hospital facilities by more than 3,800. The governor’s chief adviser reportedly told lawmakers that the count was done to avoid scrutiny by the Trump administration last summer.
In Florida, Governor Ron DeSantis was embroiled in a personal war with Rebekah Jones, a former Health Department data scientist who was fired from her position as manager of the COVID-19 data portal last May when she said she was asked to manually provide data change to support the governor’s goal of reopening bars, restaurants, and other public facilities.
The spit with Jones, who later launched an independent dashboard, culminated last December when police raided her home on suspicion that she had “unauthorized access” to a government data system. She reported for arrest in January.
Taken together, these incidents can further shake public confidence, Kleykamp said.
“I see it that governors and people who work within the state government have at least an ethical responsibility to report the numbers accurately,” he said.
“Other things to do”
As the amount of overall data on COVID-19 continues to grow, including the inclusion of vaccinations on states’ dashboards, many of the issues identified at the start of the crisis remain. Race and ethnicity data were only available for 52% of people vaccinated since December, according to a report by the Centers for Disease Control and Prevention published on February 5.
“It’s very frustrating,” said Sharfstein, Vice Dean of Johns Hopkins. “I think there was a reluctance to set some very basic standards in the previous administration.”
The 198-page Pandemic Response Plan that the Biden government released last month puts a lot of emphasis on data collection and standardization, including helping state, local, tribal and territorial governments build more transparent and interoperable platforms. The White House also wants the agencies to collect more data on race, ethnicity, geography and disability.
Kleykamp said that while data standards harmonization and support in building more compatible systems are welcome, direct investment in states could be better.
“COVID is sort of a full-time job in state government now,” he said. “And governments need to do other things than just respond to the pandemic. Some level of funding would be useful not only for the moment, but also for recreation. It will be necessary to get people back to work. “
This piece is part of the StateScoop special report on data and analysis.
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