Crumbling Data Infrastructure Undermines Nation’s Pandemic Response

Stories that caught our attention

Photo illustration of health care workers with colleagues missing, only silhouettes showing
Photo Illustration: Paula Ginsborg

When anesthesiologist Claire Rezba’s hospital in Richmond, Virginia, canceled elective surgeries because of the new coronavirus, it made life safer for her, but that didn’t stop her from worrying about her husband and her sister, both medical professionals being exposed to COVID-19 patients. Rezba decided to ease her worry about them by undertaking a project — compiling the names and obituaries of health care workers lost to COVID-19.

Essential CoverageRezba spent a couple of hours a day tracking health care worker deaths and building her list from publicly available reports. So she was shocked in mid-April, when the US Centers for Disease Control and Prevention (CDC) published its first tally, reporting that 27 health care workers had died as a result of exposure to COVID-19. By that time, Rezba had already counted more than 200. “That was upsetting,” she told Nina Martin in ProPublica. “I mean, I’m, like, just one person using Google, and I had already counted more than 200 people and they’re saying 27? That’s a big discrepancy.”

That kind of conflicting data makes it extremely difficult to assess the true impact of the pandemic on the frontline workforce or to distribute resources to the hospitals and areas most in need. “We don’t really have a good understanding of where health care workers are at greatest risk,” Christopher Friese, PhD, RN, professor of nursing at the University of Michigan, told Martin. “We’ve had to piece it together. And the fact that we’re piecing it together in 2020 is pretty disturbing.”

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.

—Maryn McKenna, Wired

To shine a light on the lives of providers hurt by the pandemic, organizations around the country are gathering data and stories about the impact of COVID-19. Recent examples include “Lost on the Frontline,” a collaboration of Kaiser Health News and the Guardian to track health care worker deaths; the California Department of Public Health’s data on skilled nursing facility worker cases and deaths; and CHCF’s tracking poll of frontline workers at skilled nursing facilities.

The lack of COVID-19 data on health care workers is symptomatic of greater public health data reporting problems across the US and in California. Without accurate, real-time data that meet national standards, the nation cannot respond effectively to the pandemic.

Yet Another Critical Problem Exposed by Coronavirus

The coronavirus is highlighting the nation’s public health data deficiencies, but it did not cause them. “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,” Maryn McKenna wrote in Wired.

Leaky and dead-end pipes won’t get the job done. Resolve to Save Lives, an international public health initiative led by former CDC Director Tom Frieden, MD, recently reviewed available COVID-19 data for each state, the District of Columbia, and Puerto Rico, including COVID-19 incidence and outcomes among health care workers. The findings, published in “Tracking COVID-19 in the United States: From Information Catastrophe to Empowered Communities (PDF),” were dire.

Of the 15 indicators — comprising 780 critical data points — identified by the authors as essential for an effective COVID-19 response, only 2% were reported. “Thirty-eight percent of indicators were reported in some way but had data limitations or did not stratify data adequately, and 60% of indicators were not reported in any way,” the authors wrote. “Most of the missing data relate to testing and contact tracing.” Examples of essential indicators include diagnostic test turnaround time and daily hospitalization per capita.

Decades of deprioritizing public health (as described in a recent Essential Coverage) coupled with the absence of federal leadership means that “we are building data information systems while the plane is flying because we didn’t already have them,” Steven Goodman, MD, MHS, PhD, a professor of epidemiology and medicine at Stanford University, told Erin Allday in the San Francisco Chronicle. “This is what underinvestment in public health looks like.”

California Lab Data Get “Stuck”

California is struggling with its own leaky-pipe issue right now. During a briefing on August 4, California Health and Human Services Secretary Mark Ghaly, MD, MPH, said state officials discovered that the state’s electronic disease reporting system had technical issues that caused state and county data on coronavirus cases and positivity rates to get “stuck.” He later clarified that a server outage and a delay in renewing a certificate to receive lab data were to blame, Sophia Bollag reported in the Sacramento Bee.

This glitch has resulted in coronavirus cases being significantly undercounted, and “the length of time the state and counties have been underreporting, the magnitude of the undercount, and the timeline for fixing the glitches remain unclear,” Emily Hoeven reported in CalMatters.

“We’re working hard and immediately to reach out to the labs that we work with to get accurate information,” Ghaly said during the briefing.

In July, with coronavirus cases surging across the state, Governor Gavin Newsom rolled back the reopening process in hard-hit areas. Without accurate, timely data on new cases, he will have difficulty assessing the efficacy of those efforts.

Race, Ethnicity Data Missing

Another significant impediment to effectively combating the pandemic is missing data on race and ethnicity. “It’s hard to identify problems or identify solutions without the data,” Adia Harvey Wingfield, PhD, professor of sociology at Washington University, told ProPublica. Without comprehensive patient data that can be segmented by such categories as race, ethnic group, job category, and gender identity, “we could potentially be facing long-term catastrophic gaps in care and coverage,” Wingfield said.

Not being counted is not new to us.

—Tashina Nunez, Native American nurse,
Yakima County, Washington

Native American communities are feeling the effects of these statistical gaps. In June, Tashina Nunez, a nurse at a hospital in Yakima County, Washington, and a Yakama Nation descendant, started noticing that Native Americans, many of whom she already knew, seemed to account for many of the hospital’s coronavirus patients. But she couldn’t confirm this because the hospital does not record race and ethnicity data.

“Not being counted is not new to us,” Nunez told the New York Times. Without that data, health care providers were at a loss for how and where to intervene. The Times reported that federal data tracking individual coronavirus cases often omits race and ethnicity information. This data gap often begins at testing sites and health clinics.

The We Must Count Coalition, a group of health, racial equity, and civil rights organizations funded in part by CHCF, is calling for systematic tracking of COVID-19 testing, cases, health outcomes, and mortality rates using data disaggregated by race, ethnicity, primary language, gender, disability status, and socioeconomic status.

Opportunity in a Crisis

The data crisis creates an opportunity for major reforms. The federal government must “establish a national public health information system that provides real-time data on disease prevalence and incidence of illness as well as on the availability of critical resources to treat affected patients,” David Blumenthal, MD, president of the Commonwealth Fund, and colleagues wrote in the New England Journal of Medicine. “This system should connect state and local health departments with one another and with private health care providers and require the participation of private health care facilities, laboratories, and manufacturers to give a complete picture of available resources.”

Investments in public health must be made before viral outbreaks occur, not in response to them. Over 75% of Americans live in states that spend less than $100 per person annually on public health, Kaiser Health News and the Associated Press found in a joint investigation, “Underfunded and Under Threat.” The public health workforce never recovered after the 2008 recession, when at least 38,000 state and local public health jobs disappeared.

In April, as some states moved to reopen even as the coronavirus continued spreading, Robert Redfield, MD, director of the CDC, told the two news agencies that his biggest regret was that “our nation failed over decades to effectively invest in public health.”

What is the state of data collection and dissemination in your county? Tweet at me with #EssentialCoverage or email me.

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