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Some states know a lot about vaccinated people who have gotten COVID-19. Pennsylvania doesn’t.

Pennsylvania can’t say how old they were, whether they were immunocompromised, how long it had been since they were vaccinated, or which vaccine they got.

The missing pieces of COVID-19 data in Pennsylvania explained and what the absent information means to the way people live their lives at this stage of the pandemic.
The missing pieces of COVID-19 data in Pennsylvania explained and what the absent information means to the way people live their lives at this stage of the pandemic.Read moreCynthia Greer

Each week in Oregon, state health officials produce a public report documenting how many people have contracted the coronavirus even after getting the vaccine, including data about their ages, races, the counties where they live, which COVID-19 variants they caught, and how sick it made them.

That type of postvaccination data has become key: Citing breakthrough case statistics, Washington, D.C., officials last week announced plans for tiered public health guidelines based on vaccination status. In Delaware, state researchers analyzed hospitalization figures to identify a startling number of severe breakthrough cases among seniors and younger immunocompromised people. In New Jersey, they found evidence of waning immunity, leading health officials to encourage booster shots.

That type of detailed analysis has not occurred in Pennsylvania.

Commonwealth officials know the number of vaccinated people who have been sickened, hospitalized, or killed by the virus since January. But they can’t say how old they were, whether they were immunocompromised, how long it had been since they were vaccinated, or which vaccine they got.

There is no sweeping federal standard for COVID-19 data collection or dissemination, and Pennsylvania is one of the roughly two dozen states that does tell the CDC the number of breakthrough cases that lead to hospitalization or death.

But its Department of Health says it hasn’t compiled all the granular data some other states have because it remains limited by a chronic staffing shortage and outdated technology.

Health Department data analysts use multiple arcane data systems that slow their work and require manual linking of records, acting Health Secretary Alison Beam told The Inquirer in an interview this month. The systems were “not set up,” she said, “to necessarily be the surveillance systems that would handle a global pandemic.”

The state started collecting more detailed data from hospitals in September and plans more analysis going forward. Without data broken down over time, policymakers — and the public — can’t identify critical trends, including within certain demographics, like age, race, or vaccine type.

In 2020, Pennsylvania tied for the third least-funded state in terms of public health dollars per person, according to an analysis from the Trust for America’s Health, a nonpartisan organization.

“This is a national phenomenon, though Pennsylvania is one of the worst, I must say, in terms of underfunded state health departments,” said Jeff Engel, a former executive director of the Council of State and Territorial Epidemiologists.

The lack of details about Pennsylvania’s breakthrough cases follows a string of data issues for the state: trouble linking people’s first and second doses, a severe undercount of vaccination among Asian Pennsylvanians, no tracking of school outbreaks, and an inability to merge Philadelphia data with the state’s.

» READ MORE: CDC says 95% of Pa. adults have gotten at least one COVID-19 vaccine dose. That’s wrong.

With the pandemic persisting as a second winter begins, experts say detailed public-facing data is critical not only for officials making policy decisions but also for people and families trying to stay safe.

“It’s important in being able to come up with guidelines and recommendations and actually base them on true fact,” said Montgomery County medical director Richard Lorraine. “I don’t think it’s possible to really overemphasize how important this data is for us.”

And a lack of data means misinformation and disinformation can spread more easily.

“When you don’t have data, people make up their own story,” said Melody Goodman, associate dean for research and associate professor of biostatistics at NYU’s School of Global Public Health.

Playing catch-up

When the pandemic struck, data teams at health departments nationwide scrambled to collect, analyze, and automate information that suddenly had the attention of millions — first cases and deaths, then vaccinations. Within those categories are slews of individual metrics, each providing a small window into the pandemic and, together, a key to the response.

With public health underfunded, they were starting off “at a deficit,” said Beth Blauer, the United States data lead for Johns Hopkins University’s Coronavirus Resource Center.

New Jersey officials urgently searched for programmers who knew an antiquated computer language — developed in the 1950s — that some of their systems used. The Nevada Health Department had to rely on fax machines for data collection. Delaware Division of Public Health Director Karyl Rattay would arrive at 6:30 a.m. each day and check coronavirus data that employees logged on whiteboards.

Ever since, health departments nationwide have been investing time and resources to catch up. “Every state has done something exceptional” with pandemic data collection, Blauer said.

Pennsylvania set up a system that collects a massive amount of coronavirus data, publishing information on cases, hospitalizations, deaths, vaccinations, and more. It now updates the data it collects on breakthrough cases monthly.

Delaware has already used some of the federal COVID-19 funding state health departments received to upgrade its systems. But Pennsylvania continues contending with many of the same limitations it faced at the pandemic’s start.

Workers are still linking data points manually — in the case of breakthrough data, for example, needing to use three systems to come up with the answer to one question. It also includes getting and linking data from hospitals, which can present its own challenge.

And millions in federal funding for improvements, including data modernization, means that the already-stretched staff at the state Department of Health is now trying to simultaneously design a better system while still striving to use the one they have to collect and analyze fresh information.

» READ MORE: More than 200,000 long-awaited state vaccination records could change the picture of who’s had COVID-19 doses in Philadelphia

Beyond that, Beam told The Inquirer, the department has to choose what data to analyze and what to ignore for now. Instead of breakthrough case data, the state this fall prioritized mapping youth vaccination information that helped it prepare for the approval of pediatric shots, she said.

But, she said, “we’re still working on it. Let me be clear that this is not something we’ve just kind of said we can’t do.”

The department declined to say how many people are on its data team. Public records showed at least 22 people employed in the department’s Bureau of Health Statistics, including 15 statisticians, four managers, and three department chiefs.

Their roles are unclear, but limitations seem to be affecting the department: Asked at an Oct. 8 news conference why the state couldn’t provide specifics on postvaccination infection rates, acting Physician General Denise Johnson said getting the details would take a “manual effort,” and the Health Department’s data team was “pretty overwhelmed.”

Why data matter

Senior public health officials in Delaware, Oregon, and New Jersey said they found it important to track more granular breakthrough case data in order to see, for instance, if immunity was waning in people who got a certain vaccine, were of a certain age, or were infected by a particular variant.

None of their health departments were prepared to do that kind of data collection at the start of the pandemic, and they all spent weeks building computer systems that would link vaccination and medical records — the same process Pennsylvania is undertaking, and “a much heavier lift than most people realized,” said Rattay. In Oregon, employees started working on it when the vaccine rollout began last winter and finished in the spring.

“It’s all about competing priorities, and this was a priority for Oregon,” said Melissa Sutton, a medical director and senior health adviser for that state. “But there were a lot of people working overtime pretty much around the clock to make it happen.”

Having the information allowed Oregon, along with about a dozen other states, to make reports to the CDC that the federal government ultimately used when deciding to approve booster shots.

» READ MORE: COVID-19 vaccine clinics are busy again as people line up for pediatric shots and boosters in Pa. and N.J.

The information gathered by Oregon, New Jersey, and Delaware also revealed that for months people who received the one-shot Johnson & Johnson vaccine were more likely to catch breakthrough COVID cases than Pfizer and Moderna recipients.

In addition to informing real policy and risk assessments, the data allowed them to communicate with the public, curb misinformation, and combat hesitancy.

“The truth is that the public is intensely interested in these data,” said Sutton. “We get so many questions about vaccine breakthroughs. They want to know that vaccines are working, and they like having Oregon data.”

In D.C., for instance, officials said last Tuesday that about 1 in 5 new cases were in fully vaccinated people compared to about 1 in 7 the previous month. But the share of vaccinated hospitalizations was not increasing, Health Department director LaQuandra Nesbitt said.

“This should really help people understand that fully vaccinated people have a much lower risk — even when they are infected with COVID — of being hospitalized,” Nesbitt told reporters at a briefing.

After months of Delaware workers undertaking the time-intensive, manual process of reviewing individual cases to see which vaccinated people were getting severely ill, the state created a data system that enables hospitals to directly send it COVID-19 patient information each day, Rattay said.

But officials acknowledged that health departments all face challenges and said it might not be possible for every state to do the same analysis. Oregon’s Sutton put it this way: “Anyone who works with data knows that it’s not as easy as it should be, ever.”

In Pennsylvania, Beam pledged more breakthrough data coming soon. Since the new requirement instituted in September, the state has gotten monthly hospitalization and case numbers from about three-quarters of acute-care hospitals.

Montgomery County’s Lorraine said he understood the state’s limitations, even though his county ended up crunching its own breakthrough data when it became clear that wouldn’t come from the state.

“The system that’s being used … it was never really designed to do this,” he said. “It’s not something that’s very easy to just kind of change on a dime and be able to get that kind of information out there. So it’s frustrating, but it’s still understandable.”

And the state continues to work on it, he said. That’s crucial, experts say, at this uncertain juncture when most restrictions are lifted, many people remain unvaccinated, and the virus is still circulating.

Said Blauer, of Johns Hopkins: “People are relying on data to navigate decisions: How they’re going to engage in public life, whether they’re going to engage in public life, whether they’re going to send their kids to school, whether they’re going to get vaccinated.”