WASHINGTON — It’s a fight over something as seemingly mundane as government data collection. But with precious hospital supplies and patient outcomes at stake, it sparked a scandal.

The Department of Health and Human Services changed the rules, quietly, earlier this week: Hospitals would be required to report data on Covid-19 patients and deaths directly to their agency, rather than to both HHS and the CDC, as they had been doing. HHS said it would help the administration better allocate supplies and drugs. But CDC supporters saw it as further evidence of the agency being sidelined, and hospitals decried the implication that it was their reporting — rather than changing federal requirements — that was to blame for data issues and supply shortages.

Nearly everyone had questions about how, exactly, it would all work. And days later, the nation’s top public health experts are still scrambling to figure out how seriously this new policy change will impact the Covid-19 response in the U.S.

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The new policy is an attempt at consolidation. Rather than requiring hospitals to report Covid-19 data both directly to HHS and to the CDC’s National Health Care Safety Network — on top of sending numbers to the state — it means they’ll only have to submit information to HHS, through a portal run by a tech contractor called TeleTracking.

To some, the change could have some merits. They say the CDC’s data system was built for tracking hospital-acquired pneumonias and urinary tract infections, for instance, and it wasn’t perfect for keeping up with coronavirus data.

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The HHS system, however, was built specifically to track the Covid-19 pandemic and it will compile far more data than just what’s currently being produced by hospitals. Plus, hospitals were already reporting similar data through the TeleTracking system. The federal government has been using those reports to determine each state’s allocation of Gilead’s Covid-19 drug, remdesivir.

But there are major drawbacks, too: Hospitals are being asked to learn a new data system as they’re struggling to keep up with a raging pandemic. Streams of data that the CDC was making available to researchers and the public have suddenly been cut off, exacerbating fears that the Trump administration is trying to stomp out any evidence that the pandemic is worse than ever.

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The change has left public health officials confused as to why HHS would roll out this change now, frustrated they weren’t given advanced warning of the change, and most of all, worried that it will seriously impede the country’s Covid response. But many public health experts STAT spoke to were reluctant to opine on the significance of the change: They emphasized that this is a highly technical change that has become a political football overnight, and that the true impact won’t be known for some time.

“It’s too early to tell how big of a deal this is,” said John Auerbach, president and CEO of Trust for America’s Health. “The fundamental issue is: Will this make it more difficult for hospitals and public health people to do the critical work that is in front of them right now? I hope it’s not a major problem.”

Below, STAT dissects what we know — and what we don’t yet fully understand — about the new policy change.

Why did this become such a big deal?

A disastrous rollout coupled with growing concerns over sidelining of the CDC led to the controversy.

While the new HHS data portal was in the works for months prior to this announcement, many major hospitals and advocacy groups were not notified in advance of the change. The change even surprised CDC officials, according to reporting from the New York Times.

“No one saw it coming,” said Rochelle Walensky, chief for infectious diseases at Massachusetts General Hospital, “and it was indicated that it would not be transparent. That casts a little bit of doubt that good things will come from this.”

The surprise left hospitals, researchers, and public health officials scrambling, which is the last thing you want during the height of a pandemic.

“In the midst of the worst public health crisis in a century, it is counter-productive to create a new mechanism which will be extremely complicated to build and implement,” public health officials, including former CDC director Tom Frieden, wrote in a statement Wednesday evening.

The legwork necessary to rapidly transition hospitals from using one data system to another can’t be understated, explained Auerbach, of the Trust for America’s Health.

“Hospitals are incredibly varied across the country in terms of their capacity to report data in a timely and accurate way,” he said. “If you’re going to say every hospital, regardless of its size, its resources, its capacity, has to learn a new system quickly, it’s problematic.”

“Trust me, having worked at CDC, you can’t always get the 50 states to report exactly the same way in a timely way,” Auerbach added. “It’s complicated.”

The stumbling blocks for hospitals seem arcane, but they could have real impacts on whether they are able to report accurate Covid-19 data: They include things like hospitals having to abandon systems programmed to auto-load data into the CDC portal and now manually enter that data into the new HHS system.

The seemingly clandestine nature of the change also fanned fears over the sidelining of the CDC writ large.

The move comes just days after the president and vice president both openly pressured the CDC to rewrite its guidelines for safely reopening schools, and news broke that a top HHS official had attacked the CDC for releasing a report on how Covid-19 impacts pregnant women.

Some understandably saw Wednesday’s move as yet another attempt to diminish the CDC’s role in responding to the Covid-19 pandemic.

“The Trump administration should be working with the CDC, supporting the CDC, and taking the CDC’s advice, rather than anything other than that,” said William Hanage, an epidemiologist at Harvard’s T.H. Chan School of Public Health.

“Our concern again is, is this going to negatively impact patients?” said Helen Boucher, chief of infectious diseases at Tufts Medical Center in Boston, and the treasurer for the Infectious Diseases Society of America. “The public health data should be managed by public health experts — that’s the CDC.”

Local health departments also insist that even the perception of Covid-19 data being politicized could make their jobs even harder.

“Local health departments are on the frontlines dealing with the politicization of the response to Covid, and any real or perceived challenges to the integrity of the data makes it that much harder to gaining the full cooperation of community members in slowing and stopping the spread,” said Adriane Casalotti, chief of government and public affairs at the National Association of County and City Health Officials.

My favorite Covid-19 tracker is missing data. Is this bad news for researchers?

The CDC’s data have been among the most reliable and easily accessible for researchers, public health officials and journalists to track Covid-19 hospitalizations. The data is openly available on the CDC’s website and it has allowed some of the most popular Covid-19 tracking sites, like covidexitstrategy.org, to include numbers on how many beds hospitals have open in different states.

“When we did our nightly refresh on July 14, the data wasn’t there,” said Ryan Panchadsaram, one of the website’s co-founders.

“The HHS Protect system is being shared within government, but there haven’t been any public indications that it’s going to be shared with all of us,” he went on. “Removing this is keeping us in the dark on a pretty critical indicator.”

It’s still unclear how much unfettered access researchers will have to the new HHS-compiled data. As of Thursday, researchers could not download raw hospitalization data sets via HHS’ website the same way they could for the CDC data.

Jose Arrieta, the chief information officer at HHS, said Wednesday the department is “exploring the best way to make this information available to the public,” but they stopped short of promising unfettered access for researchers.

Researchers STAT spoke to were split on the ultimate impact of this change for their work.

Eric Toner, a senior scholar at Johns Hopkins University, told STAT the CDC data was “not granular enough to be that useful.” He added that he supported the HHS move, although he lamented the way it was rolled out.

“They’ve done such a really really poor job in communications about this,” Toner said. “But I think fundamentally what they’re trying to do makes sense to me.”

Yet some worried that lessening the CDC’s involvement could reduce the quality of data.

“ICU and bed capacity are two key metrics of health system strain,” said Marta Wosinska, a deputy director at the Duke-Margolis Center for Health Policy and a contributor to  covidexitstrategy.org. “Not every state reports them so the loss of CDC data will impact our ability to monitor the situation in each state. We sure do hope that HHS will not only release such data without delay, but will also take steps to assure its quality.”

“If we don’t have these bits of info, we don’t get to make smart, informed decisions,” said Panchadsaram. “There have been frustrations across the board with getting these data more in real time. We’re hearing that you’ve got this incredible system. So share it! This is not just a federal response, this is a federal, state, local, and in-your-community response, so we all need to be seeing the same thing.” 

How will this affect the distribution of remdesivr?

Hypothetically, this change could help streamline distribution of remdesivir — assuming hospitals can easily use the new system.

From mid-May to mid-July, HHS was using less frequent data from both the CDC’s system and the TeleTracking portal to determine each state and territory’s allocation of the drug. Hospitals would log how many coronavirus inpatients they had and how many were in the ICU, and HHS would use that to determine how much remdesivir would go to each state. Then, the state’s health department would dole out the drug to individual hospitals.

But right from the beginning, physicians worried that by using a previous week’s data to determine this week’s allocation, the government’s remdesivir deliveries wouldn’t keep up with the exploding coronavirus numbers in certain regions.

“If you look at the fact that they had no remdesivir in hospitals in Florida, it strikes me that there was a mismatch of allocation and need,” said Walensky, of Mass. General.

She and many others were dismayed that HHS wasn’t distributing the drug based on predictive computer models that could show which states were becoming hot spots and which had caseloads that were trending downward.

“We as an organization absolutely used predictive modeling to anticipate how many ICU beds we’d need next week. You’d be silly not to. If you don’t, everything then is reactionary,” Walensky added. “It somewhat shocks me that they were not engaging in those things at a government level.”

In using daily data from hospitals, rather than the numbers from a past week, the new HHS system might help correct some of those imbalances.

“The current process is based on recent cases of COVID-19 in states/territories and helps identify where the outbreak has been most active by highlighting changes in COVID-19 patient data over given periods of time,” an HHS spokesperson told STAT by email.

That could also reduce some of the confusion that came with HHS’ sporadic requests for hospitals to input data into the TeleTracking system so that the government could divvy up the next shipment of remdesivir.

“Regular data input into the same system that has already been used for remdesivir could potentially improve the accuracy of the allocation as it doesn’t rely on individuals remembering to input data for this purpose alone at one time,” said Heather Pierce, senior director of science policy and regulatory council at the Association of American Medical Colleges.

What is the CDC saying?

The CDC’s director, Robert Redfield, downplayed the impact of the change during a press call with reporters Wednesday. He insisted that the CDC will still have the same level of access to Covid hospitalization data as it did when it was collecting the data itself.

“No one is taking access or data away from the CDC,” said Redfield. “This has no effect on the CDC’s ability to use data.”

Redfield insisted that the CDC had long been involved in the rollout of this new HHS system, which was created in April as a central repository for a slew of Covid-19 information. It tracks hospitalization data as well as data on community testing sites, supply chain issues and census data, according to the Washington-based FedScoop.

Arrieta, the HHS CIO, told reporters Wednesday that the new HHS system integrated more than 225 datasets across the U.S.

Not everyone at the CDC seems to share Redfield’s optimism. Daniel Pollock, a surveillance branch chief for CDC’s Division of Healthcare Quality Promotion, which oversees the CDC data system told NPR that the move disrupts long standing relationships between the CDC and hospitals.

Andrew Joseph contributed reporting. 

  • Sharon we all read the article and the concern that information my be kept from us is a real concern , have you seen are president? He is not right in the head ,if he could hide his huge failure of his handling of this pandemic he would.

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