As COVID Data Collection Moves From CDC to HHS, Questions Mount

As COVID Data Collection Moves From CDC to HHS, Questions Mount

WASHINGTON — The Trump administration is once again mired in a COVID-19 controversy — this time it’s over how data on the pandemic are reported to the federal government, and whether the public has access to it.

In guidance to hospitals, updated July 10 and published with little fanfare, the Department of Health and Human Services (HHS) ordered hospitals to stop submitting data on factors such as intensive care unit capacity, ventilator use, personal protective equipment (PPE) levels, and staffing shortages to the CDC’s National Healthcare Safety Network (NHSN) and instead submit it either to HHS’s new TeleTracking system — part of a larger system called HHS Protect — or to their state health department, which would then submit it to HHS.
The guidance detailed the kinds of information the federal government needs from hospitals to help make decisions around how to distribute COVID-19 supplies, treatments such as remdesivir, and other resources. The document also suggested that stakeholders had complained to the administration about the reporting burdens of multiple agencies requesting the same information.
On Wednesday, data from the CDC website used by public health experts and others to track COVID-19 hospitalizations disappeared, alarming many academics and other public health officials. It was restored the following day, The Hill reported; however, the website notes that the information will not be updated past July 14.
Some stakeholders have called for a return to the original CDC reporting system while others, like the National Governors Association, have requested that implementation of the guidance be delayed for 30 days.
On a phone call with reporters Wednesday, administration officials emphasized that they weren’t trying to withhold data from either the CDC or the public.
“No one is taking access or data away from CDC,” said CDC Director Robert Redfield, MD. “This has no effect on CDC’s ability to use this data and continue to churn out the daily data, the [Morbidity and Mortality Weekly Reports], and the guidance we publish. In fact, the new infrastructure will allow us to provide our CDC team with easier access to a broader variety of data sets than they would have without it.”
“Approximately 1,000 CDC experts have, and will continue to have, access to the raw data collected in HHS Protect — in addition to thousands of other public health professionals across HHS,” he added. CDC’s access to data “is the same today as it was yesterday.”
José Arrieta, HHS’s chief information officer, said that “CDC has complete control over who accesses their data; CDC also has complete control over the individuals within CDC who get access to HHS Protect. Right now we have approximately 1,000 CDC partners that access the system — approximately 800 partners of CDC that work at the state level that are accessing HHS Protect at this moment.”
Cause for Concern
Despite these reassurances, neither medical groups nor state and local public health officials appeared confident that the changes would help improve the overall pandemic response. And for some in public health the rapid shift made them mistrustful.
Former CDC Director Tom Frieden, MD, weighed in over Twitter saying the changes raised “fundamental concerns. What data will be collected, how, by whom, with what standards, under what authority? What quality checks and privacy safeguards will be implemented? How will the institutions collecting the data be supported?”
Others shared Frieden’s concerns.
Asked whether it was true that hospitals and state and local public health officials had complained about duplicative reporting demands, Janet Hamilton, MPH, executive director of the Council of State and Territorial Epidemiologists, said, “Yes. Absolutely.”
“Does this solve that?” she added. “No.”
As a core principle, “data needs to flow through the public health system and not around the public heath system,” Hamilton said: In other words, from hospitals and health systems to state and local public health officials, then to the CDC, and “on from there.”
Maintaining that “guiding principle” is the only way to strengthen the overall public health infrastructure so that it lasts “well beyond this public health response,” she said.
The lack of communication around such a significant change was also jarring.
The new guidance surprised both public health and healthcare stakeholders. Hospitals learned of it on a Monday, with implementation expected 2 days later. And it applies to “thousands of different locations,” Hamilton said.
Time is always critical during a public health crisis, but it’s also important to talk about and vet changes to protocols that are being followed. Guidance that doesn’t build on those long-standing connections between public health and healthcare in thinking through the best way to do something “also does not achieve the best outcome,” she noted.
“When we don’t have time to understand the guidance prior to it being released,” Hamilton said, “it’s very hard to help our healthcare partners to be able to know exactly what they should and shouldn’t do.”
Saskia Popescu, PhD, an infection prevention epidemiologist with the University of Arizona’s College of Public Health, told MedPage Today that while the NHSN may not be “perfect,” it’s “well-established,” has strong security features, and makes it easy to upload and download data.
Popescu is skeptical of those who suggest that the new system will simplify reporting.
“I don’t understand how this could possibly be easier … it’s the same amount of information. It’s the same volume … the same frequency of reporting and now you’re just putting it into a new system that … my gut says is likely to crash under all of this stress,” she said.
Thousands of hospital systems will be required to submit 30 to 40 data points each, on top of those that were already submitting their data through the TeleTracking system, she noted.
Hamilton has not dealt with the new reporting system directly, but she said she heard it is “hard to use and it’s not intuitive.” Of course the new system could evolve, “but are we just duplicating functionality that was already built to make these changes? I think the short answer is ‘yes.'”
Public health data is important to making important policy decisions. For example, the right data can help communities determine whether schools should open or remain closed.
“[W]e can say, ‘We have a lot of morbidity, but we also have a lot of healthcare capacity,'” Hamilton continued. “And so, it might be tragic, but if we see a student who might become ill, we feel like we have good capacity to be able to care for those ill individuals or those individuals most at risk.”
That’s why it’s important to have access to “a full set of data … and things like strains on healthcare capacity … the full complete picture needs to be taken into account.” That’s also why it’s important to “have these conversations with CDC to think through these challenging issues and decisions” alongside others in public health and in healthcare in collaborative ways, she said.
Trust Issues
Will Humble, MPH, executive director of the Arizona Public Health Association and the former director of the Arizona Department of Health Services, said of the COVID hospital data: “It does make sense at a high level that HHS would be the place where that data would live, given the number of agencies within HHS that would be interested in the information.”
However, he added, “it doesn’t make a whole lot of sense to me to give an entity like HHS a new task … when the barn’s on fire… when you have another agency [for whom this has] been for decades right in their wheelhouse.”
Beyond the practical matters are the political ones.
Among those working in public health, “I think that there’s basically a lack of trust with the administration and therefore there’s a lack of trust with HHS,” Humble said. Unlike the CDC, which is mainly career staff, HHS has more political appointees and they have more of a “political rather than institutional agenda,” he added.
Popescu agreed.
“If you really look at the contentious relationship the White House has had with data and the CDC, it’s hard not to see this as some kind of political effort to control data,” she said.
Adding to those concerns is a message from the administration that “you won’t be eligible for remdesivir unless you do this” — meaning report through the TeleTracking system. “So it’s very much a carrot-stick,” approach, she said.
Stakeholders Respond
A host of medical organizations also worried that the new system was too complicated and could result in coronavirus data not being disclosed.
“In the midst of the worst public health crisis in a century, it is counterproductive to create a new mechanism which will be extremely complicated to build and implement. Another area of concern is that the planning for this new approach did not substantively involve officials at the local, state, tribal and/or territorial levels. This is a time to support the public health system not take actions which may undermine its authority and critical role,” said the American Public Health Association, Trust for America’s Health, the National Association of City and County Health Officials, and the Infectious Disease Society of America, in a statement.
Karen Hoffmann, RN, the immediate past president of the Association for Professionals in Infection Control and Epidemiology (APIC), said it was “problematic and concerning” that the administration has chosen to make these major changes now.
“With the CDC we have good transparency to know the data that’s collected is … what we can see. For infection preventionists, who are actually the ones reporting and using this data and the CDC who’s using this data to make decisions about resources and support and trying to understand this new infection that we’ve only known about for 6 months, it just doesn’t make any sense,” she said.
“[T]he CDC has the expertise to track and trend data that is really the crux of the importance here,” Hoffmann noted, and it has a decades-old relationship with infection preventionists and epidemiologists.
The CDC responded “pretty nimbly” to other reporting changes to NHSN, she continued. “[G]iven how long it’s taken to get as far as we are, to try and blow [NHSN] up in the middle of a pandemic seems like a very questionable choice for prevention and for the safety of U.S. citizens.”
APIC sent a joint letter with the Society for Healthcare Epidemiology of America to Vice President Mike Pence on Thursday asking him to “reconsider this disruptive mid-course change in data collection” and permit hospitals to continue to submit their data to NHSN.
“Accurate, timely, transparent data is critical in public health, particularly as we face a still-worsening COVID-19 pandemic,” American Medical Association President Susan Bailey, MD, said in a statement. “Since the Administration announced it will streamline data reporting on hospital capacity, we have heard both questions and concerns from physicians and researchers on the front lines fighting this pandemic. We await additional details and information from the Administration on how data collection and sharing will be operationalized, but we urge and expect that the scientists at the CDC will continue to have timely, comprehensive access to data critical to inform response efforts. Additionally, state-level aggregate data must continue to be publicly accessible, as it is used to guide reopening and closing decisions.”
Lissy Hu, MD, founder and CEO of CarePort, a technology company that links hospitals with post-acute care services, said she wasn’t sure the new system would be any easier for hospitals and labs to use. “It’s difficult to see how replacing a system where you’re manually entering information with another system” that still requires manual entry is an improvement, said Hu, who spoke during a phone interview at which a public relations person was present.
“I think we’d all be better served with a system that leverages existing software hospitals already use and you could get real-time data, rather than having everyone manually enter in data,” Hu said.
In addition, the CDC will still be the agency collecting the nursing home data, not HHS. “One of the major issues we have in healthcare is silos of care, in which the data are not interconnected,” she said. “It’s concerning that this seems to reinforce that silo approach, where one arm is looking at hospital data while the CDC is taking the lead on nursing home data, even though the data collected are similar — bed availability, ventilator access, PPE access, and testing access.”

Disclosure: Tom Frieden, MD, is a second cousin of story co-author Joyce Frieden. She did not speak to him for this story and communicates with him only occasionally.

  • author['full_name']
    Shannon Firth has been reporting on health policy as MedPage Today’s Washington correspondent since 2014. She is also a member of the site’s Enterprise & Investigative Reporting team. Follow
  • author['full_name']
    Joyce Frieden oversees MedPage Today’s Washington coverage, including stories about Congress, the White House, the Supreme Court, healthcare trade associations, and federal agencies. She has 35 years of experience covering health policy. Follow

XL subscribe to our newsletter banner

Get the latest news and advice on COVID-19, direct from the experts in your inbox. Join hundreds of thousands who trust experts by subscribing to our newsletter.

Send your news and stories to us news@climaxradio.co.uk or newstories@climaxnewsroom.com and WhatsApp: +447747873668.

Before you go...

Democratic norms are being stress-tested all over the world, and the past few years have thrown up all kinds of questions we didn't know needed clarifying – how long is too long for a parliamentary prorogation? How far should politicians be allowed to intervene in court cases? To monitor these issues as closely as we have in the past we need your support, so please consider donating to The Climax News Room.