‘Very harmful’ lack of data blunts US response to outbreaks
By Sharon LaFraniere
After a middle-aged woman tested positive for COVID-19 in January at her workplace in Fairbanks, public health workers sought answers to questions vital to understanding how the virus was spreading in Alaska’s rugged interior.
The woman, they learned, had existing conditions and had not been vaccinated. She had been hospitalized but had recovered. Alaska and many other states have routinely collected that kind of information about people who test positive for the virus. Part of the goal is to paint a detailed picture of how one of the worst scourges in American history evolves and continues to kill hundreds of people daily, despite determined efforts to stop it.
But most of the information about the Fairbanks woman — and tens of millions more infected Americans — remains effectively lost to state and federal public health researchers. Decades of underinvestment in public health information systems has crippled efforts to understand the pandemic, stranding crucial data in incompatible data systems so outmoded that information often must be repeatedly typed in by hand. The data failure, a salient lesson of a pandemic that has killed more than 1 million Americans, will be expensive and time-consuming to fix.
Details of the Fairbanks woman’s case were scattered among multiple state databases, none of which connect easily to the others, much less to the Centers for Disease Control and Prevention, the federal agency in charge of tracking the virus. Nine months after she fell ill, her information was largely useless to public health researchers because it was impossible to synthesize most of it with data on the roughly 300,000 other Alaskans and the 95 million-plus other Americans who have gotten COVID.
Those same antiquated data systems are now hampering the response to the monkeypox outbreak. Once again, state and federal officials are losing time trying to retrieve information from a digital pipeline riddled with huge holes and obstacles.
The federal government invested heavily over the past decade to modernize the data systems of private hospitals and health care providers, doling out more than $38 billion in incentives to shift to electronic health records. That has enabled doctors and health care systems to share information about patients much more efficiently.
But while the private sector was modernizing its data operations, state and local health departments were largely left with the same fax machines, spreadsheets, emails and phone calls to communicate.
States and localities need $7.84 billion for data modernization over the next five years, according to an estimate by the Council of State and Territorial Epidemiologists and other nonprofit groups. Another organization, the Healthcare Information and Management Systems Society, estimates those agencies need nearly $37 billion over the next decade.
The pandemic has laid bare the consequences of neglect. Countries with national health systems like Israel and, to a lesser extent, Britain were able to get solid, timely answers to questions such as who is being hospitalized with COVID and how well vaccines are working. American health officials, in contrast, have been forced to make do with extrapolations and educated guesses based on a mishmash of data.
Facing the wildfirelike spread of the highly contagious omicron variant last December, for example, federal officials urgently needed to know whether omicron was more deadly than the delta variant that had preceded it and whether hospitals would soon be flooded with patients. But they could not get the answer from testing, hospitalization or death data, said Dr. Rochelle P. Walensky, the CDC director, because it failed to sufficiently distinguish cases by variant.
Instead, the CDC asked Kaiser Permanente of Southern California, a large private health system, to analyze its COVID patients. A preliminary study of nearly 70,000 infections from December showed patients hospitalized with omicron were less likely to be hospitalized, need intensive care or die than those infected with delta.
But that was only a snapshot, and the agency only got it by going hat in hand to a private system.
The drought of reliable data has also repeatedly left regulators high and dry in deciding whether, when and for whom additional shots of coronavirus vaccine should be authorized. Such decisions turn on how well the vaccines perform over time and against new versions of the virus. And that requires knowing how many vaccinated people are getting so-called breakthrough infections and when.
But almost two years after the first COVID shots were administered, the CDC still has no national data on breakthrough cases. A major reason is that many states and localities, citing privacy concerns, strip out names and other identifying information from much of the data they share with the CDC, making it impossible for the agency to figure out whether any given COVID patient was vaccinated.
The Food and Drug Administration now spends tens of millions of dollars annually for access to detailed COVID-related health care data from private companies. About 30 states now also report cases and deaths by vaccination status, showing that the unvaccinated are far more likely to die of COVID than those who got shots.
But those reports are incomplete, too: The state data, for instance, does not reflect prior infections, an important factor in trying to assess vaccine effectiveness.
And it took years to get this far.
Now, as the government rolls out reformulated booster shots before a possible winter virus surge, the need for up-to-date data is as pressing as ever. The new boosters target the version of a fast-evolving virus that is currently dominant. Pharmaceutical companies are expected to deliver evidence from human clinical trials showing how well they work later this year.
When the first U.S. monkeypox case was confirmed May 18, federal health officials prepared to confront another information vacuum. Federal authorities cannot generally demand public health data from states and localities, which have legal authority over that realm and zealously protect it. That has made it harder to organize a federal response to a new disease that has now spread to nearly 24,000 people nationwide.
To find out how many people were being vaccinated against monkeypox, the CDC was forced to negotiate data-sharing agreements with individual jurisdictions, just as it had to do for COVID. That process took until early September, even though the information was important to assess whether the taxpayer-funded doses were going to the right places.
State and local public health agencies have been shriveling, losing an estimated 15% of their staffs between 2008 and 2019, according to a study by the de Beaumont Foundation, a public-health-focused philanthropy. In 2019, public health accounted for 3% of the $3.8 trillion spent on health care in the United States.
The pandemic has prompted Congress to loosen its purse strings. The CDC’s $50 million annual budget for data modernization was doubled for the current fiscal year. Two pandemic relief bills provided an additional $1 billion, including funds for a new center to analyze outbreaks.
But public health funding has traced a long boom-and-bust pattern, rising during crises and shrinking once they end. Although COVID still kills about 400 Americans each day, Congress’ appetite for public health spending has waned.
And while $1 billion-plus for data modernization sounds impressive, it is roughly the cost of shifting a single major hospital system to electronic health records, Walensky said.