If you’re following the coronavirus story closely, you've gotten used to checking lots of numbers. Information about cases, hospitalizations and deaths are readily available, broken down by state and county and updated daily.
That doesn’t mean the information is current. “Even though the numbers are changing every day, those numbers can be from a lab report that’s several weeks old, as opposed to yesterday,” says Janet Hamilton, executive director of the Council of State and Territorial Epidemiologists.
Public health spending had been in decline for years leading up to the pandemic, with spending on data and technology always a low priority. Now, when timely information about the spread of a deadly infectious disease is paramount, the public health system is not equipped to process it. “When you have a disease that moves with speed and intensity, the data needs to do the same and currently that is not happening,” Hamilton says.
The nation has invested billions of dollars updating electronic health information, notably through the federal Affordable Care Act. The same care hasn’t been extended to improving data in public health. Fiscal 2020 was the first time that public health received any federal money to support data systems, but the amount was meager and didn’t arrive in time to improve conditions for the pandemic.
“We’ve neglected public health infrastructure for a long time,” says Brian Castrucci, president of the de Beaumont Foundation, which supports health initiatives. “We don’t have the tools to adequately conduct the surveillance that we need to track this virus.
Instead, health departments still receive many reports by fax, or even by mail. The information they’re sent from hospitals, physicians and labs is usually incomplete, lacking basics such as addresses and phone numbers or race and ethnicity. That means public health workers have to spend time trying to get providers on the phone to fill in the blanks so that they can gain some sense of where hot spots are flaring up.
“It can take days for providers to get back to public health,” Hamilton says. “Sometimes, it never happens.”
There have been repeated controversies about coronavirus data, such as concerns that the Trump administration might be fudging the numbers by having hospitals bypass the Centers for Disease Control and Prevention and send patient information directly to the White House. There have been questions about whether some states have sought to soften their own numbers, for instance by not reporting information about cases in schools.
In May, Florida’s health department fired the data scientist who managed the state’s coronavirus dashboard, who’d accused the state of trying to hide information. Last month, Florida’s office of policy and budget hired a sports blogger who’s spread conspiracy theories about the coronavirus as part of the data analysis team tracking the disease.
Controversies aside, even when there’s good-faith handling of the numbers, there are still frequent glitches and a fair bit of confusion. No two states collect and report COVID-19 data in exactly the same way, and individual states have often recalibrated their figures due to errors in collection. The coronavirus counts that show up on news sites and television are often drawn from private sources such as Johns Hopkins University or The Atlantic’s COVID Tracking Project, as opposed to any official government source.
The lack of clear, consistent data has created issues with trust. Members of the public have computers in their pocket offering timely information about stocks, weather and traffic, but can’t be sure that coronavirus dashboards provide the same. “You can have the best data infrastructure in the world, but if people don’t trust the information, it does you no good,” Castrucci says.
Seeking Uniform Information
There are no national standards when it comes to reporting testing results. Some states lump in results from positive antigen tests, which show whether an individual has been infected in the past, but others don’t. Not every state reports new hospitalizations. States also take different approaches when it comes to reporting numbers of individuals tested vs. reporting the number of tests administered. Those numbers can look very different, depending on how you’re counting people who are tested repeatedly, such as nursing home residents or health care workers.
It’s easy enough to figure out trends – whether case counts are heading up or down in a given state – but accurate snapshots about the true nature of current conditions are harder to come by. “A bunch of states have dashboards, but no two are alike on this information and how it’s presented,” says Delaware state Auditor Kathy McGuiness.
She’s leading an initiative among auditors to come up with a framework for at least figuring out which public health data they need to know. “We make our decisions based on data,” she says. “You don’t even know if you have all the receipts and whether they’ve all been collected.”
Welcome to our world, say public health officials. They complain they can’t extract the information they need from labs and health providers.
“Some of the day-to-day tracking, we know it’s not current,” says Marcus Plescia, chief medical officer for the Association of State and Territorial Health Officials. “We know we don’t have all the data for yesterday.”
Equipment Is Lacking
Some of this should have been predictable from the beginning. When the pandemic struck and health departments sent workers home, many of them lacked the laptops needed to work remotely. “There’s outdated infrastructure, from hardware to being able to store data in the cloud,” says Chrissie Juliano, executive director of the Big Cities Health Coalition, a forum for 30 of the nation’s largest municipal health departments.
When it comes to data, health departments struggle with the basics. They have to piece together information collected by phone, fax and spreadsheets sent as email attachments. Sometimes hospitals don’t want to share data embedded in proprietary software systems.
In Britain, nearly 16,000 cases went unreported this fall because the public health service used Excel, a 1980s-era spreadsheet program, to set up a template that could only handle about 1,400 cases, meaning any further cases were simply dropped.
“Public health is pretty slow to adopt new technologies of all types because of the lack of resources,” says Crystal Watson, a senior scholar at the Johns Hopkins Center for Health Security.
After he became CDC director, Robert Redfield joked that he hadn’t realized he'd become a data archeologist. “With opioids, the nation couldn’t count the cases reliably or cross them with where the pills were or even with deaths,” says Georges Benjamin, executive director of the American Public Health Association.
Public health is fragmented, with responsibilities split among thousands of federal, state and local agencies that in turn rely on millions of providers for information. Those departments and the politicians that oversee them all use data to make decisions. When the data isn’t timely or wholly accurate, it calls into question whether they’re making the right decisions.
Unless there’s ongoing and sustained investment in information technology, that dynamic will remain unchanged by the pandemic.
“It’s not rocket science,” Watson says, “but it’s really essential to the function of public health in the future.”