True number of COVID-19 patients uncertain due to shift to new data system mid-pandemic

RALEIGH (WTVD) -- Medical experts across the country are raising concerns over the federal government's collection of COVID-19 data after officials instituted a new system mid-pandemic.

"In the middle of an outbreak like this with a lot going on is really not the time to change technology and reporting systems," said Dr. Georges Benjamin, the executive director of the American Public Health Association.

The ABC11 I-Team obtained two letters detailing medical experts across the country and North Carolina top state officials' concerns over the new method for collection and reporting COVID-19 data.

In mid-July, the Trump administration instructed hospitals to change how and where they reported COVID-19 data.

"In some ways that was very much out of the blue, it was not expected at all and kind of in the real sense threw everyone for a loop," said Dr. Deverick Anderson, an infection disease specialist and professor with Duke Health.

Anderson is also one of more than 30 current and former members of a federal advisory committee who spoke out about these concerns in a letter.

"We are troubled by the Administration's unexpected decision to divert COVID-19 data reporting from CDC to DHHS," state the letter obtained by the ABC11 I-Team.

READ THE FULL LETTER

Anderson said the hospitals used the previous reporting system for decades prior to the COVID-19 pandemic. The former database was maintained by the Centers for Disease Control and Prevention (CDC), now the information is being sent to the U.S. Department of Health and Human Services (DHHS).

The sudden change left hospitals across the country "scrambling" to meet new requirements, according the letter.

"It's one thing for this issue to come up at a well-resourced place like Duke, it's very much another issue for this to come up at some of the smaller community hospitals that were really left in a tailspin as they tried to scramble with such limited resources and many instances not having alternative strategies to track how this COVID-19 pandemic was playing out in that setting," Anderson explained.

Beyond being an inconvenience to hospital officials who are already strained fighting a worldwide pandemic, the letter also highlighted widespread impacts.

"We are extremely concerned about this abrupt change in COVID-19 reporting," the experts wrote in the letter. The letter goes on to state the change "will have serious consequences on data integrity," and "the data's precision is at risk."

The data ranges from hospital bed capacity to COVID patient specific data and has significant impact on how hospitals, states and private businesses make decisions.

"The data that is being put into the system is not leading to many decisions at all," Anderson said.

He explains it's difficult to use the data right now to draw comparisons between regions and with a new system it will be hard to compare data over time.

"At the end of the day it means you have delays in data and inaccurate data and to the extent that you're using your data for data-driven decisions, it makes those decisions less reliable because the data was less reliable," Benjamin said. "Right now we're making profound decisions about going back to work, going back to school and I don't know how you do that without a good sound reliable data source."

He also said inaccurate data would impact communities' understanding of mortality rates and ability to conduct effective contact tracing.

Anderson said he's concerned about the lack of information that is being communicated with infection prevention teams in these hospital systems.

"Essentially, the data awareness has been taken away from them, so now this is an issue that is being dealt elsewhere and in many instances is not trickling back down to again my mind a very critical piece to the prevention puzzle," Anderson said.
Another key issue is the ability to compare data between health systems and regions as well as looking for trends overtime.

North Carolina health officials also expressed concern over the change.

The ABC11 I-Team obtained a letter addressed to Vice President Mike Pence, Dr. Deborah Birx and U.S. Health Secretary Alex Azar from Governor Roy Cooper and Dr. Mandy Cohen sent the week of the initial announcement in July.

READ THE FULL LETTER

The letter stated the officials understood the need to adapt data reporting and capture efficient data, but pointed to issues on how the shift was conducted.

"The lack of notice, inadequate guidance, and the requirement of immediate compliance tied to the threat of losing allocations of Remdesivir, convalescent plasma, and PPE - supplies critical to North Carolina's COVID-19 response efforts - is deeply troubling," Cohen and Cooper wrote.

Many health systems had only days to make this switch.

Prior to the new database, North Carolina's health department reporting the data for hospitals.

"Our State and our hospitals were surprised by this announcement, with less than 24 hours' notice of the changes, undermining the processes NCDHHS has built in collaboration with our hospital partners since March," the letter said.

The letter goes on to state N.C. officials tried to continue reporting for hospitals but was denied the request. Requests for clarification on the changes were also ignored, according to the letter.

"The threat to North Carolina's supply of critical treatments and resources in highly concerning, especially at such a critical moment in our response with cases and hospitalizations increasing in North Carolina," Cooper and Cohen wrote in the July 17 letter.

The letter concludes by requesting the administration give more time to adjust to the requirements.

NCDHHS said since the letter, more clarification has been given. The state department told ABC11 the biggest challenge is around handling triple the amount of data points in such a short notice. North Carolina is still working on automating this data process but nothing on the state's own dashboard has been impacted.

U.S. Health Secretary Azar said the change stemmed from a need for real time data and to know how best to distribute the limited supply of Remdesivir.

In a press conference in Alaska last week, he told reporters, only 80% of hospitals were reporting to the CDC system and it lacked the ability to provide daily real-time data.

"The CDC is still fully integrated into it. The CDC has full information. The data is transparent, always will be. So, that's the only change that happened is to actually get more real time, more accurate, more complete, we want to get as close to 100% of hospitals reporting so that we know exactly what our resources are, where our patients are, so we can make sure that we are caring for people the best way possible," Azar said during a press conference on August 12.

However, more than a month into the new database, officials are still concerned and problems persist.

The HHS' COVID-19 dashboard still shows 100% of facilities are not reporting information. As few as 49% of facilities in New Jersey are reporting.

At the end of July, members with the COVID Tracking Project that monitors this data daily wrote the guidelines had caused major problems.

"These problems mean that our hospitalization data-a crucial metric of the COVID-19 pandemic-is, for now, unreliable, and likely an undercount. We do not think that either the state-level hospitalization data or the new federal data is reliable in isolation," the July 28 blog stated.

In the week following the implementation of the new data system, the COVID Tracking Project found HHS reported 24% more patients hospitalized than states did. Last week, a similar analysis by the team found the discrepancies between federal and state hospitalization numbers continued.

"It makes the data less reliable and every time you tell someone something and then you have to go back and tell them something different and have a 'oops' moment then it undermines your credibility and your reliability," Benjamin said.

Benjamin said he still hears from concerned hospitals.

"There are some hospitals that quite frankly have not been able to adapt yet," he said.

While the problems still persist, Anderson said he still hopes the Administration will switch back to the CDC's system. In the meantime, he said this data is just one tool in the fight against the virus and is hopeful it will get ironed out one way or another to help lead to action.

"I think that it is something that will take time and that's time that we didn't need to spend on this issue," he said.
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