“Long COVID” has more questions than answers, and Indiana is one of only four U.S. states awarded a portion of $9 million to help get to the bottom of it by using health informatics. The Regenstrief Institute in Indianapolis says earning a piece of the competitive grant from the U.S. Centers for Disease Control and Prevention is not only an indication of Indiana’s “unparalleled public health informatics,” but will also uncover important business implications for the Hoosier state.
“The best estimate we have right now on the burden of long COVID is somewhere around 20% of people who have had COVID. If that’s true, that’s twice the number of people who have diabetes today in the U.S.,” says Regenstrief Interim Director of the Center for Biomedical Informatics Dr. Brian Dixon. “If 20% of people who become infected end up with debilitating symptoms of some kind for six months, a year or the rest of their lives, that’s going to interfere with their productivity. That would be a huge cost to the healthcare system, but also in loss of productivity for employers.”
Regenstrief and Indiana University’s schools of medicine and public health will focus their efforts on building one of the first population-based surveillance systems for long COVID using data from the state; the information from Indiana and three other sites will inform national-level estimates. The five-year study relies on data from electronic health records (EHRs) statewide.
“Clinical care focuses on one patient at a time, but public or population health tries to understand what’s happening with populations,” says Regenstrief Vice President of Data and Analytics Dr. Shaun Grannis.
Dixon says “the reality is, the scientific community doesn’t really understand long COVID today.” Currently, long COVID is defined as persistent symptoms that continue four weeks or longer after a person’s initial infection. The study will analyze its prevalence, trends and patient outcomes.
“Doctors struggle with diagnosing long COVID in the clinic, and public health struggles with how to define it and monitor it,” says Dixon. “We really don’t know what percentage of the population has long COVID or will get long COVID as we go forward. How will that translate into burden of disease for 2023 and beyond? We don’t know. That’s why it’s important to study it.”
Dixon notes that some of the more severe symptoms of long COVID, such as dizziness, blacking out and difficulty breathing, impact patients’ quality of life and their ability to work.
“[That creates] long-term cost implications for the healthcare system and for individuals who are paying for at least a portion their care,” says Dixon, “so we start to think about costs for employers, health plans and hospitals. There’s a whole host of reasons why we need to better understand long COVID and its burden on the population.”
Grannis says the fact that Indiana was among only four states in the U.S. to be part of the project “speaks to the state’s life sciences strength” and Indiana’s prominence in EHRs in particular. The state is known as a pioneer—if not the birthplace—of health information exchanges, which aggregate and oversee the secure exchange of EHRs.
“Here in Indiana, we have one of the country’s longest running health information exchanges that connects most of the healthcare entities in the state,” says Grannis. “Using a system like that, we’re able to—in an anonymous fashion—understand and study population trends.”
Using data from Indiana healthcare facilities, the team is hopeful the analysis will open the door to better methods to identify long COVID symptoms earlier, take better care of those individuals and intervene sooner to minimize the impacts of long Covid.
“As a scientist and researcher, it’s exciting to turn over rocks and see what’s underneath them,” says Grannis. “It’s fun to learn things, but boy, when you can learn things that actually have a positive impact on peoples’ lives, that’s exciting.”
Dixon says, in addition to analyzing long COVID, the award aims to train tomorrow’s data scientists.