Lack of public data hampers COVID-19 fight

Ali Mokdad, an epidemiologist at the University of Washington, has been trying to make sense of this summer’s COVID-19 surge. He says he can theorize only in a general way about why the virus spread and what to do about it.

“Yes, the new cases appear to be mainly young people,” he said. “Yes, they may be letting down their guard. Yes, it might make sense to close the bars.”

But as a global health expert at the university’s Institute for Health Metrics and Evaluation, he says he should be able provide much more nuanced answers. 

“Why can’t we figure out what’s contributing to the recent spread? It is very simple,” Mokdad said. “No access to data.”

In a move seen as potentially obstructing access to COVID-19 information even more, the Trump administration last month ordered hospitals to stop sending data to the Centers for Disease Control and Prevention, and instead send it to a private data firm under contract with the Department of Health and Human Services, whose secretary reports directly to the White House.

Skyrocketing cases, clashes among federal leaders and a hodgepodge of state data have left many Americans asking how the United States will get back to anything resembling normal life.

The answer is straightforward, Mokdad and other epidemiologists say: wearing masks, social distancing, more testing — and better data.

Epidemiologists insist that standardizing the COVID-19 data states and localities publish is essential to helping people navigate their daily lives and enabling political leaders to make science-based decisions that the public can support.

It’s particularly critical now, they say, as parents, teachers and elected officials are deciding when to open schools and how to keep them open.

“This virus isn’t disappearing,” said Dr. William Schaffner, professor of preventive medicine and infectious diseases at Vanderbilt University’s medical school. “COVID will be here three years from now in some form. We hope we get a vaccine soon. But even when we do, people will need data to see the impact of vaccinations.”

State and local health officials say providing better data isn’t so simple. Meager budgets, stodgy technology and disjointed state and local reporting systems make standardizing data an arduous undertaking.

“It’s a nice idea,” said Oscar Alleyne, chief of programs and services at the National Association of County and City Health Officials. “But it’s not the highest priority in most jurisdictions right now.

“Local health departments are focused on what’s in front of them, and that’s the data they need to decide how to open schools without getting caught up in a whirlwind of amplifying disease.”

Still, epidemiologists point out that every other developed country battling the virus has been able to publish the kind of data average people and scientists need to track the course of the disease each day and pivot their individual behavior and public response accordingly.

The nation’s lack of federal leadership has caused it to fall behind other countries in combating the virus, said Dr. Tom Frieden, former CDC chief, at a news briefing last month.

He and other public health experts urged state and local health agencies to adopt a uniform system of reporting on testing, positive cases, hospitalizations and deaths, as well as on the effectiveness of contact tracing efforts and the percentage of people wearing masks.

Separately, researchers at Stanford University and the University of California who are trying to determine what caused California’s COVID-19 surge, reported last month that the state had refused to release crucial data, citing privacy concerns and workload constraints.

Detailed case and contact-tracing data from state and county health authorities, they said, could point to more effective, targeted approaches to slowing the pandemic. Without the data, the scientists said, little more can be done.

For the states’ part, Janet Hamilton, executive director of the Council of State and Territorial Epidemiologists, said privacy protections and worries about publishing incomplete data are major concerns.

“It’s a matter of trying to present data in ways that get people to make behavior changes, which usually happens when people are impacted personally or when they have local information,” she said. “We want to provide data as locally as possible without violating privacy rights or confusing people. But we know we have information gaps.”

For example, she said, in some communities where very little testing is available and, therefore, very few cases are reported, people could decide that they are not at risk, when they actually are.

Measuring to manage

Public health officials and advocates argued in a new report that without uniform data, the United States will continue to lag behind the rest of the world in fighting the pandemic.

The groups included Frieden’s organization, Resolve to Save Lives, along with the Johns Hopkins Center for Health Security, the American Public Health Association, Trust for America’s Health and the Association of Schools and Programs of Public Health.

People need to know what their local health departments are doing to contain the virus and hold them accountable, said Dr. Cyrus Shahpar, who directs the epidemics prevention team at Resolve to Save Lives, an initiative of Vital Strategies, in an interview with Stateline.

Shahpar, who lives in California, said, “If there’s a bunch of fires outside, I want to know how many are contained. Right now, we know there are big fires everywhere. But we have no idea which ones are contained.

“We also need to compare cities and states. If I’m in New York state, I need to know which states to restrict travel from. I also need to know which states and cities are safe to visit.”

An important piece of missing information, he said, is the lag time between collecting a test sample and getting the results. Is the delay the same in every ZIP code? Are poor neighborhoods and predominantly Black and brown neighborhoods experiencing greater testing delays? No states are providing that type of data, Shahpur said.

Public health agencies need to tell the public what the local data means, Shahpur said. Five cases could be a crisis in a tiny rural town, while 50 could be manageable in a medium-sized city. The average person doesn’t know that on their own, he said.

Some states and cities have developed red, orange, yellow and green alert level systems that include a list of guidance for each age and demographic group at each risk level, Shahpur said. That type of graphic presentation can help guide businesses and residents as they plan their days, he said.

To let people know how well their local health department is controlling the virus, cities and states should report the percentage of new cases arising from so-called community spread, outside of known transmission chains, said Dr. Amesh Adalja, a senior scholar at the Johns Hopkins Center for Health Security.

“How many new cases were already on their radar and how many weren’t? That’s really important, because if too many cases have unknown sources, the virus could be spiraling out of control,” Adalja said. “People need to know that.”

Only a handful of states do that.

Oregon’s health department measures the success of contact tracing based on the percentage of new cases that are tied to a known source. Every day, the state posts those percentages on its COVID-19 dashboard.

For most of July, the daily number of new cases rose in Oregon, as did the percentage of cases with no known source. As of July 28, more than 73% of new cases had no known source.  The goal, according to the state, is that no more than 30% of new cases are without a known source.

Virginia also tracks contact tracing by publishing the percentage of new cases and contacts the health department is able to reach within 24 hours of receiving test results. As of last week, the state reported reaching 75% of all new cases and 85% of their contacts the same day.

Irrelevant data

“Far too often states provide numbers to show their success, when it really is not success at all,” Dr. Georges Benjamin, executive director of the American Public Health Association, said at the Resolve to Save Lives news briefing.

Epidemiologists say many state and local websites provide numbers that can be misconstrued or that require people to do their own math to put them in context.

For example, daily test totals mean nothing, Adalja said, unless the percentage of positive tests is provided along with the date the samples were taken. Those numbers should be parsed at the county or ZIP code level and presented as a number per capita so they can be compared among states, counties and cities. And while daily case counts may be useful, the trend is more revealing, he said.

The daily number of hospital admissions is important data for epidemiologists but is not helpful for average people, Adalja said. They need to know how many COVID-19 patients are in their local hospital on any given day and whether the hospital is near capacity. They also need to know how many health care workers have tested positive for the virus and how many people are coming into emergency departments with flu-like symptoms.

According to Frieden’s organization, states are providing only 40% of the data needed to fight the pandemic, with some states reporting less relevant data than others.

No state is reporting data on testing delays, and few are reporting on contact tracing. Frieden said the nonprofit is working with states to help them provide more data, much of which he said they already have.

“It’s no surprise we haven’t been able to get this virus under control,” said Dr. Ali Khan, dean of the University of Nebraska Medical Center’s public health school and a former CDC official. “States don’t have timely, complete, relevant or transparent data. And they lack the political will to develop it. That needs to change.”

This article was first posted to Stateline, an initiative of The Pew Charitable Trusts.