COVID Registry: ‘Not Just Another Dashboard’
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As a subscriber you can listen to articles at work, in the car, or while you work out. Subscribe Now“Dashboards” abound as the pandemic demands data-crunching, but a new project is collecting information that aims to paint a more complete and holistic picture of Hoosiers’ journey through the crisis, including their mental health, economic health and overall well-being. Leaders of the statewide Indiana COVID-19 Registry say it’s also unique because it goes “directly to the source”; the data is collected exclusively through Hoosiers who participate in surveys over the course of time. The goal is to better understand the ripple effects of the pandemic and how state and local leaders can best respond.
“[The pandemic] has touched our lives in so many different ways. I think this registry is helping define that holistic, longitudinal story or journey,” says Dr. Sarah Wiehe, co-director of the Indiana Clinical and Translational Sciences Institute (CTSI). “[The registry] goes directly to the source, so we can hear from Hoosiers what their experience is, then collectively see what factors helped or perhaps hurt their chances of staying healthy—and healthy in the broadest sense—in terms of health and wellness, not just whether you got sick physically, but all the complex aftermath that has occurred.”
Most existing dashboards compile basic electronic health record-type data—COVID positive or negative, vaccinated or unvaccinated—but the registry aims to uncover “the true, full impact of the pandemic on Hoosiers,” says University of Notre Dame’s Dr. Marie Lynn Miranda, the registry’s lead scientist. She developed a similar registry during her time at Rice University in Texas in response to another disaster: Hurricane Harvey. That registry tracked the ripple effects of how flooding caused housing damage, threats like mold and bacterial contamination and respiratory issues.
“Every time someone interacts with [the Indiana COVID-19 Registry], we also put a time stamp on it,” says Miranda, who is also Notre Dame’s Charles and Jill Fischer provost. “For example, when the governor announces [mask mandate changes], we can look and see if there’s a meaningful change in the way people are responding to a variety of questions. Are the economic impacts lessening? Are Hoosiers feeling we’re economically coming out of the pandemic? Are the mental health stresses changing in any way?”
The registry will collect demographic information and detailed geographic location, so scientists can see “how it’s playing out throughout the state” at a finer resolution than county-level, while also protecting registrants’ identifying information.
Beyond painting a more complete picture of Hoosiers’ health and overall well-being throughout the pandemic, Miranda says the registry will help uncover how to manage COVID in a holistic way.
“As Indiana works its way through the pandemic and prepares for a post-pandemic future, it’s really important that we acknowledge, understand and provide tailored interventions for the physical health impacts of COVID, but also for the mental health impacts and the economic impacts,” says Miranda.
“I think we’ll gain so much insight from Hoosiers’ stories in terms of how we can put in more prevention measures or interventions in the future to help everyone do better—God forbid, another round of COVID or another pandemic of sorts comes around,” says Wiehe.
While the registry is based at Notre Dame, Miranda says the project is leveraging the university’s membership in the CTSI and one of its key programs, All IN for Health. The volunteer registry connects Hoosiers to active health studies, and it helped the project launch quickly after Miranda came to Notre Dame in July 2020.
“I can’t overstate the significance of the partnership with CTSI. My research group was new to Indiana, and the CTSI has a whole network of relationships and ways of operating in Indiana that are really productive,” says Miranda. “It’s an amazing example of the great things universities across the state can do together when we collaborate.”
Nearly 1,500 Hoosiers are registrants currently; 92% are white and 71% are female, so the researchers are encouraging men and people of color to participate. Leaders says the initial survey takes 10 minutes, and follow-up surveys are shorter.
“The more people who participate in the registry, the better job we can do thinking about the full suite of impacts associated with COVID and the best set of responses that state and local officials can undertake,” says Miranda. “Participating in the registry is a way to help the state come through the pandemic successfully.”
Miranda says the registry can uncover how Hoosiers’ opinions and actions change over time and in response to public health policy throughout the pandemic.
Wiehe says the Indiana COVID-19 Registry collects different types of data than other dashboards to view the pandemic through a different lens.