These doctors are honoring every fallen health-care worker by creating an ‘electronic graveyard’

The 40-year-old physician began keeping track of health-care worker deaths as a way to cope with her own anxiety about the coronavirus and its potential impact on her family — her husband is also a physician and her sister is a nurse practitioner.

The practice started as an outgrowth of a ritual she had started as a medical resident, when she would keep a list of her deceased patients’ names. At the end of the year, she would bring the list to church to light a candle and pray for them.

“It really helped me release all the feelings I had about being exposed to so much stuff,” she said.

The initiative started when Rezba came across an article about the death of Diedre Wilkes. The Georgia mammogram technician had been dead for at least 12 hours before her body was found at home with her 4-year-old child.

“That story really resonated with me,” Rezba said. “She was essentially my age, her child was essentially the same age as my child … at first, she was just reported as an anonymous nurse and that upset me.”

She kept digging until she found a name.

The next death she came across was James Goodrich, a neurosurgeon known for successfully operating on conjoined twins.

“By that point it was a done deal, I was keeping a list,” she said. In mid-April, the CDC released its first official tally of health-care worker deaths, at a total of 27. But by that point, Rezba had counted more than 150. “It was infuriating that the numbers were so different, because I’m just one person with Google and an iPhone.”

Her list became a mission.

Around the same time, Erica Bial, an interventional pain physician at a Boston-area hospital, started keeping track of doctors who died of covid-19 on a dedicated Facebook page.

In March, the 45-year-old says she was one of the first people in her hospital to come down with covid-19.

“I got really, really, sitting-on-my-couch-alone, pondering-my-own-mortality sick,” she said. She started reading everything she could find about the virus as she grappled with the disconnect between her own experience and the media’s depiction.

She realized “there was no central location that was really looking at the impact on American physicians,” she says.

She decided to crowdsource through her Facebook page, initially sharing it with her network of colleagues and friends. Soon Rezba joined the page, and the two of them now share and cross-post memorials.

Today, they have more than 15,000 followers between the two of them.

Despite the pervasiveness of the pandemic in America — more than 200,000 dead, with case numbers continuing to rise in many states — and the initial outpouring of appreciation for health-care and other front-line workers in the spring, there is no central place for a reliable accounting of the toll on the country’s health-care workers.

In that absence, accounts such as Rezba’s and Bial’s have sprung up on social media, to both fill in data gaps and provide a space for colleagues and family members to honor the lives of those they have lost. Other Twitter accounts include @FacesofCOVID and @Covid-19RIP, which share stories of Americans who have died of covid-19. Cleavon Gilman, an emergency medicine doctor in Arizona, started the hashtag #CovidDeaths, which pulls from social media posts like Rezba’s.

According to health-care economist Bianca Frogner, who also serves as the director of the University of Washington’s Center for Health Workforce Studies, one contributing factor to the CDC’s “gross undercount” of health-care worker deaths and infections is fragmented data collection.

“Generally, when we report any kind of disease outbreak, or information about mortality, we don’t tend to collect information about occupation,” she said.

Community test sites do not collect patient occupations, either.

Data scientists and public health experts worry that confusion surrounding the Trump administration’s changing requirements for hospital reporting will further muddy data collection. And while health-care facilities are required to share data with state and federal officials, many only share limited information about exposure and infections among their employees, or do not report them at all.

Sydnie Boylan, a registered nurse in Los Angeles and the vice president of the Service Employees International Union Local 121-RN, which represents more than 9,000 nurses throughout Southern California, said that her workplace, Hollywood Presbyterian Health Center, does not alert staff when a fellow employee has been infected with the coronavirus, maintaining that it would be a violation of the Health Insurance Portability and Accountability Act, or HIPAA.

“If one of my co-workers who I had lunch with came up positive and had to [take time] off, they would not tell us that they were off with covid-19,” she said. “People say, ‘We appreciate our health-care workers,’ you see these slogans everywhere. But it doesn’t really feel like that.”

Frogner noted that people in “behind-the-scenes” jobs, such as aides, assistants, and those who work in food or laundry service, are often left out of our perception of front-line workers entirely.

For this reason, Rezba chose Twitter as the platform for her memorial project. “I liked that there’s no hierarchy there,” she said. “The tweets are just in order.”.

Rezba said she uses a combination of Google searches, obituaries on Legacy.com, GoFundMe and social media to keep track of the deaths.

“I try to include something personal about them to humanize the loss,” she said. She spends at least an hour a day searching for names and writing the accompanying bios.

For her Facebook page memorial, Bial emphasizes the importance of consistency in including identifying data like age, specialty and location. “I was trying to think about what the important elements were that would let us track who these people were,” Bial said.

“I’m trying to create an electronic graveyard that is respectful and that’s data-rich.”