This past summer, the U.S. Department of Health and Human Services triggered alarm among public health advocates when it directed hospitals to bypass the Centers for Disease Control and Prevention when reporting COVID-19 patient data.

President-elect Joe Biden's next moves regarding COVID-19 data reporting, and HHS as a whole, are still unknown. But the coronavirus crisis makes it clear that the huge gaps in information sharing in the United States must be addressed, says former HHS Chief Technology Officer Ed Simcox.  

"My recommendation to HHS and Congress, and everyone else is: Now that the 21st Century Cures Act has been activated, that we step back and create a data reporting system that leverages these modern technologies," said Simcox in an interview with Healthcare IT News.  

Simcox, now chief strategy officer at precision medicine company LifeOmic, left HHS in February – just before the COVID-19 pandemic walloped the United States. (HHS has not had a CTO since.) But, he says, HHS during his tenure began developing an All-Hazards Data Hub in cooperation with the CDC, aimed at streamlining public health reporting.

"Congress three times has asked the CDC to prepare for pandemic and epidemics by creating an all-hazards information technology system," said Simcox – most recently with the Pandemic and All-Hazards Preparedness and Advancing Innovation Act of 2019, which was signed into law with bipartisan support in June of that year.

Still, Simcox argued, when COVID-19 hit, "again we found ourselves in a position where the CDC was not able to prioritize the directives in any measurable way."  

This is similar to the position long taken by HHS regarding the switch to the HHS Protect reporting system: that the CDC's existing data collection structure was not robust enough to deal with a crisis of COVID-19's magnitude.  

"What happened is that the CDC had a lot of holes in the data that was being reported, and it was super frustrating for HHS, frustrating for CDC, ... frustrating for the White House, and ... frustrating for Congress," said Simcox.

"The system that was selected within CDC to be the data collection mechanism for COVID back in March and April, unfortunately, was not purpose-built for that," he continued.

In October, ProPublica published a scathing look at the chaos inside the CDC's approach to COVID-19, including the switch to reporting to HHS. Sources described unrealistic expectations of hospitals with regard to reporting requirements and unacknowledged gaps in information.

The changeover has had its own issues: Hospital associations have flagged technical difficulties with reporting to HHS, either directly or via TeleTracking, which collects data on its behalf.

They've also expressed concerns about a potential "crackdown" from the Centers for Medicare and Medicaid Services that would revoke federal funding in response to reporting noncompliance, particularly when closed hospitals are listed as nonreporting.

They have pointed to the sheer amount of time it takes to report individual data elements, many on a daily basis.

Simcox acknowledges that load, saying that balance must be achieved between pandemic reporting requirements and provider capacity. "Why don't we reduce the reporting burden by pulling data from electronic health records wherever possible, and phase in an implementation of FHIR, working with industry in a public-private partnership to make this the cause celebre for FHIR?"

At this point, he said, the publication of mortality rates in the United States lags by one to two weeks – sometimes longer. That's not effective (to say the least) for implementing a public health strategy.

"The virus moves very quickly through communities. If we're trying to apply resources to a particular area to stave off a blooming of the virus, it's very important to see leading indicators of mortality, not trailing indicators."

Another important step, he says, will be to require data to be reported through a standards-based Internet portal: "We need a way to standardize the data being received by CDC or HHS."  

"I think it's important for HHS to eat its own dog food," he said. In other words: "If we're going to ask providers to embrace these [reporting] technologies, it stands to reason … that any database that has to do with reporting to the federal government should embrace those same standards." 

And in the interim, the government could reduce the burden "by looking to claims data." 

"That data is more accurate and complete, and standardized in a lot of ways," he said. "We should be looking to supplement the data being reported at the local level and by providers."  

In the future, he's hopeful about the implementation of an All-Hazards Database for the next crisis. 

"It needs to be a government-wide effort," he said. "If HHS leads on this, I think we will have a good chance of success in supporting the work of [the Office of the National Coordinator for Health IT]. And especially around FHIR and the 21st Century Cures Act."  

Simcox made it clear that he's not specifically blaming the CDC, providers or individual states for the slapdash nature of data reporting at this juncture.   

"What I really wish is that our timing would have been different," he said. "I wish that the rules would have been implemented for 21st Century Cures about two years ago. Because I believe that, if that would have been the case and software providers would have actuated the regulations in their software (which they're busy doing now), we would be in a much different position as a nation in controlling this."

Kat Jercich is senior editor of Healthcare IT News.
Twitter: @kjercich
Email: kjercich@himss.org
Healthcare IT News is a HIMSS Media publication.