“If you are lucky enough to work in a large health care system that has a sophisticated electronic medical record, then possibly you can push one button and have all the data flow up to NHSN,” says Angela Vassallo, an epidemiologist who formerly worked at HHS and is now chief clinical adviser to the infection-prevention firm Covid Smart. “But that’s a rare experience. Most hospitals have an infection preventionist, usually an entire team, responsible for transferring that data by hand.”
There lies the core problem. Despite big efforts back during the Obama administration to funnel all US health care data into one large-bore pipeline, what exists now resembles what you’d find behind the walls of an old house: pipes going everywhere, patched at improbable angles, some of them leaky, and some of them dead ends. To take some examples from the coronavirus response: Covid-19 hospital admissions were measured by the NHSN (before HHS intervened), but cases coming to emergency departments were reported in a different database, and test results were reported first to local or state health departments, and then sent up to the CDC.
Covid-19 data in particular has been so messy that volunteer efforts have sprung up to fix it. These include the COVID Tracking Project—compiled from multiple sources and currently the most comprehensive set of statistics, used by media organizations and apparently by the White House—and Covid Exit Strategy, which uses data from the COVID Tracking Project and the CDC.
Last week, the American Public Health Association, the Johns Hopkins Center, and Resolve to Save Lives, a nonprofit led by former CDC director Tom Frieden, released a comprehensive report on Covid-19 data collection. Pulling no punches, they called the current situation an “information catastrophe.”
The US, they found, does not have national-, state-, county-, or city-level standards for Covid-19 data. Every state maintains some form of coronavirus dashboard (and some have several), but every dashboard is different; no two states present the same data categories, nor visualize them the same way. The data presented by states is “inconsistent, incomplete, and inaccessible,” the group found: Out of 15 key pieces of data that each state should be presenting—things such as new confirmed and probable cases, new tests performed, and percentage of tests that are positive—only 38 percent of the indicators are reported in some way, with limitations, and 60 percent are not reported at all.
“This is not the fault of the states—there was no federal leadership,” Frieden emphasized in an interview with WIRED. “And this is legitimately difficult. But it’s not impossible. It just requires commitment.”
But the problem of incomplete, messy data is older and deeper than this pandemic. Four scholars from the health-policy think tank the Commonwealth Fund called out the broader problem just last week in an essay in The New England Journal of Medicine, naming health data as one of four interlocking health care crises exposed by Covid-19. (The others were reliance on employer-provided health care, financial losses in rural and primary-care practices, and the effect of the pandemic on racial and ethinic minorities.)
“There is no national public health information system—electronic or otherwise—that enables authorities to identify regional variation in the demand for, and supply of, resources critical to managing Covid-19,” they wrote. The fix they recommended: a national public health information system that would record diagnoses in real time, monitor the materials hospitals need, and link hospitals and outpatient care, state and local health departments, and laboratories and manufacturers to maintain real-time reporting on disease occurrence, preventive measures, and equipment production.