The urgent need for COVID-19 insights demanded that researchers everywhere join forces to bridge clinical science with data science and speed meaningful answers to patients. PCORnet®, the National Patient-Centered Clinical Research Network, was one of the earliest collaborators in the pandemic in April of 2020 when the U.S. Centers for Disease Control and Prevention (CDC) reached out to the Coordinating Center for PCORnet with a question: Could PCORnet infrastructure be used for real-time reporting and surveillance of COVID-19 patterns across the country?
Meeting the moment
The answer was yes. A core strength of PCORnet infrastructure lies in the Network’s partnership with diverse health systems that hold electronic health records for more than 66 million people across the United States. These records reside in different systems. However, using a Common Data Model, the participating Network Partners de-identify and standardize them so a researcher can ask the same question to millions of people at once. By allowing researchers to break free of the patchwork of siloes that represent most of America’s healthcare data, PCORnet can surface a much-needed birds eye view of historic health patterns across the country.
PCORnet resources were not designed for real-time reporting, and yet COVID-19 answers couldn’t wait. So PCORnet researchers worked with the CDC in partnership with the Public Health Informatics Institute (PHII), a program of the Task Force for Global Health, to build a custom Common Data Model specific to COVID-19. Then, they tapped this de-identified, firewall-protected dataset on a bi-weekly basis to surface trending patterns of infection across the U.S. With this approach, they could get the answers they needed without sacrificing important patient privacy or confidentiality protections.
Informing the pandemic
Scientists have learned more about COVID-19 at a faster pace than any disease in human history, and the CDC’s collaboration with PCORnet has been an important part of that journey. Over the past year, the partnership has resulted in key publications to support public health:
Racial and ethnic disparities during the COVID-19 pandemic
In January, CDC’s Morbidity and Mortality Weekly Report published results of a PCORnet-utilized study that found that therapeutic use of monoclonal antibodies, which are highly effective at preventing the progression of COVID-19, were prescribed unequally in Black, Asian, and Hispanic COVID-19 patients, adding important evidence about the complex topic of health equity in the time of COVID-19.
New symptoms after COVID-19 infection
In February, JAMA Network published results from another CDC-PCORnet collaborative effort, which found that while most COVID-19 patients recovered fully, approximately one in ten had new symptoms or health conditions, also referred to as “long COVID” or “post-COVID conditions.” The findings suggest that doctors should monitor the health of their COVID-19 patients for many months after they test positive for the virus.
Rates of myocarditis and pericarditis after COVID-19 vaccination
In April, CDC’s Morbidity and Mortality Weekly Report published results illustrating how PCORnet resources were used to discover that adolescents and young adults who tested positive for COVID-19 were more likely to experience myocarditis, inflammation of the heart, or pericarditis, inflammation of the tissue surrounding the heart, than same aged individuals who received mRNA COVID-19 vaccines.
According to Tom Carton, who is the Principle Investigator of REACHnet, these accelerated findings during the pandemic have pushed research into a new realm that will serve communities long after it subsides.
“Having now seen the phenomenal pace and quality of insights we have been able to achieve through the pandemic, the research paradigm has evolved, and there’s no going back,” he said.
Behind the scenes of a trailblazing collaboration
To continue bringing these kinds of insights to light, collaboration is key. CDC and PCORnet-affiliated researchers used regular briefings to discuss the most urgent answers needed to protect public health and how to best leverage PCORnet to find them. Their initial questions were general in nature: What is the COVID-19 positivity rate by care setting? What are the ages, sex, and other demographics of people getting infected?
As the pandemic continued, PCORnet-driven answers began to surface. The queries were able to capture information on patients with COVID-19 through diagnostic codes as well as lab test results. They also captured data from both ambulatory and in-patient care settings, which many other distributed research networks were unable to provide. As a result, the CDC could look at a large, representative sample of patients and investigate the characteristics of people who were getting infected and seeking care for the virus, predictors of who develops severe disease or complications, and whether there are long-term consequences of COVID-19 infection.
Research in a post-pandemic environment
The CDC-PCORnet collaboration is currently moving into its third year, and PCORnet-accessible data is now integrated into CDC data surveillance systems. While the stakeholders are still exploring important COVID-19-related topics, they are also discussing potential future areas where PCORnet resources can support rapid insights, including HIV and other infectious diseases.
“We’ve firmly established trust with the CDC in PCORnet, and we’ve proven the Network’s value to speed answers to emerging, fast-moving questions in times of crisis,” said Carton. “I envision this as an ongoing collaboration wherein the PCORnet infrastructure will be an important tool to help CDC better respond to and support public health, both now and in the future.”