Sharing shrinking COVID-19 data with zero funding: Why Tara Moriarty carries on

It’s the kind of stuff you’d see in a war movie about an unshakable crew who carries on despite all obstacles. Try reading this in a movie trailer voice: The first week after COVID-19 hit our shores, they launched their website. When Canada was ramping up its response, they helped volunteers find placements. When vaccines became available, they made a space for people to ask questions. When there was little data on spread, they published a hazard index.And when funding dried up, they continued. And when data sources began to disappear, they persevered.The crew here is COVID-19 Resources Canada, lead by co-founder Tara Moriarty, an infectious disease researcher and associate professor in the faculty of dentistry and Temerty Faculty of medicine at University of Toronto. She co-founded COVID-19 Resources Canada with Dr. Guillaume Bourque, a genomics researcher from McGill University. The group initially matched volunteers with opportunities and informed researchers about funding opportunities, “anything to get Canada’s efforts off the ground, fast,” she explained.The volunteers were scientists, students, retired professors and more, helping with varied tasks such as research, testing, contact tracing and supporting long-term care homes. “We had about 7,000 people across Canada sign up to volunteer,” Moriarty said. They deployed more than 140,000 volunteer hours to help with Canada’s COVID response.When vaccines became available, older Canadians were fearful about being the first to get them. COVID-19 Resources Canada starting offering informal Zoom sessions where people could ask questions. The sessions were led by science communicators, researchers and scientists volunteering their time. Since they started, “COVID conversations” have reached more than 40,000 people.Read: Making visible the invisible: Supporting long COVID patients and the people caring for themThe COVID conversations continue three times a week, although fewer sessions run in the summer. About 20 to 30 people join per session from all across Canada, often from rural areas. Many are people living with disabilities, health conditions where they still really need to protect themselves from COVID, Moriarty notes. “They’re trying to get information and also support in their efforts to do that.” “A lot of what we do now is help people navigate the healthcare system in relation to vaccines and infectious diseases and COVID.”Caring for vulnerable groups is what prompted Moriarty to start COVID-19 Resources Canada. In 2020, Moriarty’s mother lived with her and a number of personal support workers (PSW) came to provide care. Moriarty “was shocked but not surprised that information about COVID had not filtered down to PSWs, at the very beginning. They weren’t given any sort of guidance on how to protect themselves or their patients.” “I guess what I realized is that things can really fall apart quickly if you’re not filling in all the gaps,” Moriarty explained. Her mother has dementia and her father had dementia before he passed away in 2017. She knew the healthcare system can be hard to navigate. She knew the people who would suffer the most were those of her parents’ generation. The work was rewarding. Most people involved in COVID-19 Resources Canada in those early days were researchers who normally “wrote papers for other researchers,” but with the initiative, “we had a real-time effect on people’s lives,” Moriarty said.Read: Practice statements on helping patients with post COVID-19 conditionAfter the first two years of COVID-19 Resources Canada, a number of the original crew, including Dr. Bourque, had to step away. This included people who had been seconded to COVID-19 Resources Canada as part of their work.“Around that time, I considered stopping,” Moriarty said. She was keen to return to normal work/life balance, and much of the Canadian population was vaccinated. But then Omicron hit. Moriarty knew that Canada was particularly susceptible to Omicron variant since the population hadn’t suffered as many severe outcomes as the U.S. and U.K. “I knew it was bad and that we needed people to know.”Initially, Moriarty thought that once everyone was infected, the worst would be over. Yet the excess mortality rates in 2022 and 2023 remained high. In early 2022, the most common request was to have information on the COVID-19 situation in Canada. “Information was disappearing,” she said. “As everything reopened again, there was less and less of it.”COVID-19 Resources Canada started releasing a hazard index, similar to a fire safety risk of UV index. They estimate the number of infections, hospitalizations, long-COVID cases and death due to COVID-19, even though data is limited. Trying to develop an accurate model was tricky, since so many infections went unreported. “It felt like every time we did the forecast, four months later when excess mortality data would come in, or when Statistics Canada would release the more recent Public Health Association of Canada case dataset for COVID, we would have really underestimated how bad the underreporting was,” she said. “We have to once again figure out how to do the forecast with less and less data,” Moriarty said. “We’re constantly adapting with disappearing data.”Read: Canadian Covid Society launches to address long-term effects, prevent further illnessTrying to adapt to less and less data is wearing down Moriarty and her team, especially since they’re now operating without funding. COVID-19 Resources Canada wasn’t funded in the last round of Public Health Association Canada’s immunization partnership program.“If we want to continue getting funding from them, we’re going to need to expand some of our programs,” she said.COVID-19 Resources Canada is still a big organization, and needs administrative work, like project planning, website maintenance, internal and external communications. Grant money would allow for paid staff (like in the early days) and honouraria to facilitators, scientists and healthcare providers who work with the group.Moriarty is currently writing grant applications, both for her own lab and COVID-19 Resources Canada. She’s also trying to finish some papers and submit them for publication. Her lab investigates mechanisms behind blood-borne dissemination of bacterial pathogens, with a main focus on Borrelia burgdorferi, responsible for Lyme disease.Read: Much ado in the world of Lyme vaccine development The scramble for funding is partly due to exhaustion. Grant writing should have been prioritized earlier, Moriarty said. “I started to get burnt out about two years ago, which is when I should have been writing grants and renewing funding for my own research group as well,” she said. “It’s been challenging to keep all of it going,” she said.“We’re always on the back foot. We’re exhausted. I’m exhausted. I need a vacation and I haven’t had one really since the beginning of COVID.”Although Moriarty and her team are tired and muddied, they remain determined to continue to choose action over inaction.“We will always prioritize getting information to people that they need to protect themselves and that healthcare providers need to protect their patients,” Moriarty said.“Even though we’re tired and everything else, we still feel great pride in doing work that serves people,” she said. Emails still flood in from people who tell the team that the information helped them. People with health conditions thank them for prioritizing them, when they often feel isolated, abandoned by society.“That’s why we do this,” Moriarty said.She echoed the sentiments she said she shares with healthcare professionals: “There’s not enough of us . . . but every day we make a difference.”

Sharing shrinking COVID-19 data with zero funding: Why Tara Moriarty carries on

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