Jill Anderson’s weekends are consumed sitting at a desk in her Webster Groves home, hunting down COVID-19 vaccine appointments for those in need. 

A hundred miles west down I-70 in Fulton, Amy Golub can often be found at midnight navigating the intricacies of Walmart and CVS’ websites to snag new appointments as soon as they’re available. 

They’ve never met in person, but Anderson and Golub have spent months working as part of a collective known as the “Vaccine Sharks” — a nascent group of about 10 people who have devoted countless hours of their free time to helping frustrated Missourians find a vaccine dose. 

And they’re just two of dozens of similar helpers across the state who have connected through informal networks and over social media.

“None of us really know how this happened,” Golub said of their new volunteer role in the vaccine process. “A month ago, none of us even did this at all.”

With no comprehensive, centralized registration system in Missouri, the work of groups like the Vaccine Sharks has become an alternative for frustrated residents trying to traverse a complicated and constantly changing distribution system.

The state’s attempt at a centralized system, the Missouri Vaccine Navigator, has at times created more issues than it solved. And it’s had a slow adoption by local providers on the ground, with many forgoing it.

The Missouri Vaccine Navigator launched in February, after many local public health departments and hospital systems had already developed registration systems of their own.

Lisa Cox, a spokeswoman for the Department of Health and Senior Services, said the system was intended for providers who did not already have a process in place or were seeking a better one.

It’s been useful for large-scale vaccination events, several local health departments told The Independent this week. But one local health director says glitches and kinks in the first few weeks contributed to wastage of doses.

“It’s not something that I would ever rely fully on as far as scheduling, because it seemed to be off one way or the other,” Joetta Hunt, the administrator for the Putnam County Health Department, said of the Vaccine Navigator.

Conflicting systems

On Feb. 8, Gov. Mike Parson announced the launch of the new Missouri Vaccine Navigator registry, touting it as a new tool to help streamline Missouri’s registration and appointment process.

“Although vaccine supply nationwide is still quite limited, this registration process will help connect Missourians with more avenues to receive a vaccine,” Parson said in a statement at the time.

While Cox said DHSS met with several local public health departments and regional teams as the system was being put together, its launch was met with uncertainty from both residents and vaccine providers who had already been collecting waitlists of their own for weeks. 

“I am not sure how or whether we are also collaborating with the state system, whether the state system will send us people who have registered with them in St. Louis County,” Christopher Ave, a spokesman for the St. Louis County Department of Public Health, said a day after the system’s launch last month. “I don’t know how that’s supposed to work.”

Nearly two-and-half months after its launch, about 40 providers are hosting events, some daily, through the system, Cox said. More than 1,600 sites are currently listed as approved vaccine providers on the state’s map.

“We continue to encourage use of this tool by as many providers as possible to make the process easier for residents,” Cox said.

Meanwhile, residents have grown increasingly frustrated, with many logging on to the Vaccine Navigator as their first stop, only to only be shown vaccination events that are hours away.

“It’s clunky and it’s temperamental,” Anderson said of the system, later adding: “And if you think that’s all there are, you’re missing out on a whole other system of events that you could be going to that would be a lot more convenient if you knew about them and knew how to sign up for them.”

Cox said the state is working to add its map of vaccine providers to the system’s scheduling page in order to help residents more easily search for other providers if the events listed don’t work for them.

Developed by Qualtrics, a global experience management software company headquartered in Seattle, Washington and Provo, Utah, and administered with the support of Ernst & Young LLP, a London-based professional services network, the system has been used by local governments across the country — including in St. Louis County.

For the Missouri Vaccine Navigator’s current contract, Cox said the state paid $576,000 to Ernst & Young and spent $152,000 for Qualtrics licenses.

Even as the state collaborates with the St. Louis County Department of Public Health to offer large-scale vaccination events in the county, registration is being funneled exclusively through the county health department’s Qualtrics system.

That’s what the county health department has found works best, Ave said, as attempting to integrate its system with the state’s would require a significant lift.

“We’ve literally had to create a system from scratch, buying pieces off the shelf like Qualtrics,” Ave said. “And we did it and we did not waste time. And we went as fast as we could.”

Other health departments said it wouldn’t be possible to easily integrate their systems, as they can’t upload their own waitlists to the state’s system. Cox said local lists have been used to send out emails about events available for registration through the Vaccine Navigator.

‘Technology’s wonderful if it works’

Reasons providers aren’t using the Missouri Vaccine Navigator vary.

In Putnam County, which made headlines earlier this month for 143 doses going to waste at a mass vaccination event, Hunt said relying on the Missouri Vaccine Navigator contributed to those issues.

The night before the mass vaccination event, the system showed nearly 100 more people who were registered, but then dropped off the next day. Hunt said she wasn’t sure if that was due to potential duplicates or cancellations.

And three weeks later for the booster clinic, the system showed fewer people than what the health department’s list had scheduled.

When it came to scheduling a booster clinic, there also wasn’t a seamless option to have that event notice sent to the same residents who had attended the first. Instead, Hunt had to set it up as a private event and reach out to residents.

One of the main limitations was that during a mass vaccination event, the system didn’t allow for a way to check which people who had registered had been checked in or successfully vaccinated, Hunt said, making planning toward the end of the day more difficult. 

Despite the issues, Hunt said she’s already seen improvements in the system over the last month. For example, now Hunt can schedule residents for a specific event on the backend.

“I think it has a place. And for these mass events, it was beneficial to have,” Hunt said. “We won’t use it in our office. But we do a lot of things on a much smaller scale, so we wouldn’t need it.”

It was a point Scott Clardy, the assistant director of the Columbia/Boone County Department of Public Health and Human Services, echoed. During the department’s first mass vaccination event supported by the Missouri National Guard, the system was useful in that it allowed for data to be inputted directly to the state’s immunization database, ShowMeVax.

But it could also be confusing for residents who showed up thinking that registering with the Vaccine Navigator meant they had also registered for an appointment. After signing up for the system, residents will be notified when their tier activates and must check back regularly for open events to register for.

“It’s serving its purpose as far as helping us be able to get data into the immunization registry,” Clardy said. “But as far as a scheduling device for our local clinics… it’s just not as helpful as it could have been if it would have been in place at the very beginning when the vaccine first became available.”

In both Ripley County in southeast Missouri and Macon County in northern Missouri, internet access isn’t always a given — making accessing the Vaccine Navigator more challenging.

Back in December, the Macon County Health Department began receiving calls from residents eager for the vaccine. Their list quickly grew to over 2,000 residents, but the department hasn’t had any issues meeting demand, said Mike Chambers, the department’s administrator.

“In my opinion, it was a little bit too late because we’d already started doing mass vaccination clinics when that was rolling out,” Chambers said of the state’s system.

Jan Morrow, the director of the Ripley County Public Health Center, fielded calls last month from frustrated residents, who without internet access, had called the Vaccine Navigator’s hotline instead to register over the phone. 

Demand was so high an automated recording said no one was available.

“Technology’s wonderful if it works,” Morrow said, “but there were several glitches in that system.”

In just one day on Feb. 22, just shy of 2,000 calls were handled, Cox said. And since the state’s COVID vaccine hotline was launched last March, about 10 percent of its handled calls had been in the first two weeks of launching the Vaccine Navigator, Cox said last month.

“Additional staff support, both temporary and National Guard have and continue to be added,” Cox said at the time.

Helpers filling the gap

For now, health departments are still recommending that residents in search of a vaccine appointment get on every list they can and check multiple providers.

That’s where groups like the Vaccine Sharks come in.

Through a Google Form, the group of volunteers has connected hundreds of residents with appointments. They’ve gone through their own iterations of their system too, getting flooded with requests in the beginning and now working to be a resource for those most in need by reaching out to community orgs they can collaborate with.

They’ve figured out sites’ nuances and quirks — like how sometimes on the CVS website it might show no appointments for St. Louis, but if you go through Montana and put in a St. Louis zip code, some might pop up.

In a constantly evolving Google Doc, Anderson compiles new events along with a running list of tips. And Golub’s own phone number has gotten circulated as helping one person led to more of their friends and family through word of mouth.

For both Anderson and Golub, their desire to help was born out of their own frustrations and difficulties navigating the system for their own families. Golub’s mom contracted COVID-19 in her nursing home, and with it came a fear that Golub had been unprepared for.

“She’s 81. She has late stage Alzheimer’s. So I was really so scared when she tested positive,” Golub said, later adding: “I’m prepared to lose my mom to Alzheimer’s. I wasn’t prepared for that.”

When her mom received her first vaccine dose in January, a wave of relief washed over Golub. And it’s that feeling that drives her, knowing that the more people that can be vaccinated, the more everyone will be better protected.

Increases in vaccine supply on the horizon make it easier for Anderson to push herself to keep going, knowing that hopefully we’ll all be out of this soon. Despite issues like a lack of clear communication and clunky websites that have defined the vaccine rollout, what it has highlighted is how people can rise to a challenge and help from where they are.

“There’s a gap. And people are quickly moving to fill that gap to help their communities,” Anderson said. “And I think that that kind of stuff shows the best of who we are as people.”