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Pa.'s flawed death reporting system fueled COVID-19 data spikes, mistrust

Sara Simon of Spotlight PA and Ryan Briggs and Nina Feldman of WHYY News
Hospital staff members enter an elevator with the body of a COVID-19 victim in July at St. Jude Medical Center in Fullerton, California. The U.S. death toll is closing in on 200,000.

For years, Pennsylvania has had a hard time counting its dead.

A new analysis shows that in 2017, Pennsylvania had the most severe death reporting lags in the country. Almost every state was able to send the vast majority of death certificates to federal health officials within three months, but Pennsylvania was able to manage only two-thirds of the work — earning the dubious distinction of slowest in the country.

Unlike many other states, Pennsylvania was still doing much of its death registration by hand, relying on a cumbersome system of faxed paper and manual data entry. It was a process identified by the federal government as “dire and in need of immediate support.”

Death reporting delays can have serious consequences. For example, they can hinder the ability to get protective equipment to communities in need of help. The sooner health officials can analyze death certificates and identify trends, the sooner they can take action and respond to deadly outbreaks of disease — a necessity made all too clear by the COVID-19 pandemic.

Four years ago, Pennsylvania launched its solution: an Electronic Death Registration System that would allow funeral directors, physicians, coroners and others to quickly and directly submit death data, vastly improving the time it would take to respond to an outbreak.

But an investigation by Spotlight PA and WHYY News found that state health officials abandoned their urgency in implementing the new technology. When the coronavirus arrived and data became central to saving lives, the system was still largely voluntary, with thousands of funeral homes, hospitals and coroner's offices unprepared to use it.

It wasn’t until March 2020 that state officials abruptly mandated use of the electronic system for the reporting of COVID-19 deaths, leading to confusion, delays and crossed wires at a time when public officials were relying on fast data to inform their pandemic response.

As a result, the state’s official death count unexpectedly fluctuated during the pandemic’s deadliest months, fueling conspiracy theories and undermining public trust in the numbers. Even now, six months into the crisis, the state is continuing to add months-old deaths to its official tally, skewing a real-time view of the virus.

Dan Weinberger, an associate professor at the Yale School of Public Health, said death statistics submitted by Pennsylvania officials to the Centers for Disease Control and Prevention for January through April of this year were national outliers — showing such steep declines in deaths amid flu season and a pandemic that the data strained credulity.

“There are no other states in which we see declines quite this dramatic,” he said. “When it’s that obvious and abrupt, it’s usually an indication that the data hadn’t been fully reported.”

The Pennsylvania Department of Health blamed the prolonged rollout on a small number of coroners who refused to be trained on the electronic system, and on others who did not voluntarily use the technology, like funeral directors and hospital personnel. Unlike in other states, coroners do not report directly to the health department, said Nate Wardle, a spokesperson for the agency.

More:State refuses to detail 6 new COVID-19 deaths in York County

Spotlight PA and WHYY News repeatedly asked to interview Audrey Marrocco, director of the state’s Bureau of Health Statistics and Registries, which oversees death reporting. The department denied those requests, but eventually arranged an interview with Executive Deputy Secretary Sarah Boateng.

In June, Boateng acknowledged that the initial rollout of the system had not gone as planned.

“What we saw, obviously, is that by four years later, not everyone had taken the steps to start using that electronic system,” Boateng said.

Yet she could not fully explain why the state hadn’t ordered mandatory electronic reporting any earlier.

“We did not have a global pandemic prior to now,” she said.

Delayed rollout, wasted time

The Electronic Death Registration System — or EDRS — is not new, and it’s not unique to Pennsylvania.

About 20 states were using their first iterations of the tool by 2006, according to the CDC. Neighboring states New Jersey and New York said they finished the switch to electronic systems in 2013 and 2019, respectively.

Fast, accurate data can help inform decisions about where to send supplies and how to allocate resources. Having a modernized system that produces timely death information can “improve outbreak and disaster response efforts,” a CDC website says.

“It’s a whole lot easier to detect people who are dead than people who are sick,” said Robert Anderson, chief of the Mortality Statistics Branch at the CDC’s National Center for Health Statistics. “The earlier we can get information on mortality, the quicker we can develop interventions.”

Pennsylvania’s plan was to implement EDRS gradually, much like other states had done. The system was officially launched in October 2016, said Wardle, the spokesperson for the health department, and the rollout was set to occur in phases due to the “complexity of implementing an EDRS.”

Pennsylvania’s goal was to have “all end users trained to register deaths electronically … by the spring of 2017,” according to an early document.

Health Secretary Rachel Levine said in early June her department is "working to update and rewrite our regulations to ensure that they protect the residents of today and tomorrow."

At the time, there were few states in as dire need of an overhaul as Pennsylvania.

New data from the CDC shows that in 2017, the vast majority of U.S. states were able to send information about nearly all deaths to federal health officials within 13 weeks of the date deaths occurred. Pennsylvania, however, lagged far behind, able to manage only 65% of the work in that same time period.

But by the end of 2017, and despite a quarter of a million dollars spent just on the first phase of the rollout, the state still had not trained everyone on the technology — let alone all 67 county coroner or medical examiner offices.

At the time, 13 county coroner offices refused to participate in the training, Wardle said. A document previously available on the health department’s website showed the following 13 offices were not trained on EDRS as of December 2017: Armstrong, Bedford, Berks, Blair, Delaware, Franklin, Huntingdon, Lebanon, Mifflin, Montour, Somerset, Venango and Warren.

Charles Kiessling Jr., coroner in Lycoming County and president of the Pennsylvania Coroners Association, said part of the issue was that about 25 coroner offices in the state had already been using a different electronic system called Quincy. Kiessling said that for years he had asked the health department to build a bridge between Quincy and EDRS so coroners didn’t have to input the same information twice.

According to Quincy’s documentation, it shouldn’t have been difficult to implement a bridge connecting the two electronic systems, as Quincy was designed specifically to be able to hook into EDRS applications. 

“Hopefully the bridges will be completed in the future,” said Kiessling, “but this system has been being developed for many years and is still not complete.”

He said his office in Lycoming County has one deputy coroner trained on EDRS, “but most of the time we print paper death certificates out of Quincy and deliver to the funeral directors who input the information into the EDRS system.”

Wardle, the spokesperson, acknowledged “there is still work to do,” saying the department has waited five months for several coroners to begin the bridge testing.

‘Deer in the headlights’

The second phase of EDRS training, dedicated to onboarding the tens of thousands of medical professionals legally tasked with completing cause-of-death paperwork, didn’t begin until April 2019.

Ongoing delays were apparent at the beginning of 2020.

Kiessling said he met with a group of Pennsylvania physicians in late February 2020, at the request of a UPMC hospital in Williamsport. At that time, the coronavirus was already international news. Wuhan, China, had been ravaged by the pandemic, and the U.S. had documented its first confirmed case the month prior.

Kiessling said he traveled with Marrocco, the director of the state’s Bureau of Health Statistics and Registries office, to discuss issues with death certificates. According to Kiessling, the physicians looked like “deer in the headlights” when it came to the electronic system.

They didn’t know what EDRS was, he said. But they would soon find out.

On March 6, just 12 days before Pennsylvania’s first recorded COVID-19 death, the state health department issued a mandate: All deaths attributed to COVID-19 would have to be reported through EDRS.

Two weeks later, the department went further. Beginning March 20, all funeral homes in the state would need to use the system to report all deaths, COVID-19 or not.

Funeral homes without computers or internet service could apply for EDRS waivers, allowing them to continue with paper, the department said. But for everyone else, protocol had shifted. The state was demanding tens of thousands of funeral directors, coroners and physicians at hospitals and nursing homes to adjust their workflows effectively overnight.

Many weren’t prepared. Some even started flagging concerns with the health department.

Through a public-records request, Spotlight PA and WHYY News obtained copies of nearly 60 EDRS waiver applications submitted to the department.

“How can we do mandatory EDRS reporting when proper training has not been provided,” one funeral director wrote in a waiver application dated March 19.

“Physicians are not yet set up for this,” warned another on March 20.

“We are EDRS capable,” wrote a third funeral director on March 23. “But most of the hospitals, doctors and nursing facilities are NOT able to respond in kind.”

According to data obtained through a public-records request, more than 7,550 medical professionals, support staff and administrators rushed to sign up for EDRS between March and April, compared with only about 350 new users who signed up in January and February.

“The problem was, they implemented this in the middle of a pandemic,” said Kiessling.

Though Kiessling credited the state for pushing out a flood of digital training materials and webinars, he questioned the health department’s assumption that front-line physicians would even have time to participate.

“Doctors don’t have time to sit in the ICU and watch these videos,” he said. “People are dying.”

Dr. Desiree Marshall, director of Autopsy and After Death Services for University of Washington Medicine, examines the preserved heart of a person who died of COVID-19 related complications, as she works in a negative-pressure laboratory, Tuesday, July 14, 2020, in Seattle. Seven months after the first patients were hospitalized in China battling an infection doctors had never seen before, countless hours of treatment and research are providing a much closer look at the new coronavirus and the lethal disease it has unleashed. (AP Photo/Ted S. Warren)

Death toll fluctuates

For the first two months of the crisis — the deadliest two months in Pennsylvania’s COVID-19 history — the state didn’t draw from EDRS to produce its public death count.

Instead, death data was being reported out of a different system, PA-NEDSS, and pulled from EDRS with the help of algorithms, Wardle, the spokesperson, said in April.

But without a fully functional electronic death system in place, the state found itself playing catch-up — adding weeks-old deaths to its count and causing the death toll to spike several times in April and May.

Health Secretary Dr. Rachel Levine often cited difficulties “reconciling” data from different sources, as she reported hundreds of deaths that had occurred in weeks prior.

In April, as neighboring states were showing enormous total death increases compared with the same period in 2019, health department officials said they were unable to provide an exact count of how many people had died — from any cause — in Pennsylvania in March.

The reason: 2,000 uncounted paper death certificates that continued to stream into the office.

In April and May, more than 60% of death information was reported partially on paper in what the state calls a “hybrid” EDRS process. Doctors from hospitals or nursing homes continued to avoid using the electronic system to fill out their portions of death certificates, instead faxing the details directly to the state. This left funeral directors in a lurch, waiting for the state to sync the records and handle the manual data entry of the medical information before the death record could be fully processed.

Nearly half of all 12,500 inquiries sent to the state’s EDRS support helpline during the first half of 2020 were from funeral directors requesting “status updates on data entry,” an attorney for the state health department said in response to a public-records request from Spotlight PA and WHYY News.

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