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When Answers Can’t Wait: PCORnet® Data Resources Speed COVID-19 Research

Posted on by Jodi Snare

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.”

PCORnet® Shines at 2022 Health Datapalooza

Posted on by Jodi Snare

Every year, the Health Datapalooza and National Health Policy Conference brings together leaders in data and policy to directly confront the biggest challenges and opportunities facing U.S. health care. As a pivotal resource generating fast, trustworthy answers to health questions raised by the COVID-19 pandemic, PCORnet®, the National Patient-Centered Clinical Research Network, was a hot topic at this year’s event. Researchers showcased how the Network was used across three distinct COVID-related projects during a presentation that demonstrated how PCORnet® empowered rapid COVID-19 insights.

“The concrete results that PCORnet Network Partners delivered through the pandemic are impressive, and this was a wonderful opportunity to share them broadly with an audience of policy leaders, big thinkers and problem solvers,” said Russell Rothman, moderator for the presentation and chair of the PCORnet Steering Committee. “The Network’s collaborative use of data, powerful infrastructure and commitment to patient engagement has made it an important resource for bringing meaningful insights to questions around everything from healthcare worker burnout to national trends, long-COVID, and more. I’m proud of what we’ve accomplished and look forward to using the Network for more good work in the future.”

PCORnet-enabled answers to COVID-19

With access to data from everyday encounters with more than 66 million people across the U.S., PCORnet has long been successfully supporting large-scale, multi-site research. However, interest in the Network surged during the pandemic, when its broad and diverse scope and research-ready infrastructure helped deliver rapid answers to inform public health. PCORnet leaders Russell Rothman, Emily O’Brien, Tom Carton and Suchitra Rao presented at the 2022 conference about results from three different PCORnet-enabled projects:

HERO Research Program: The HERO Research Program was rapidly launched in April 2020 to understand the challenges facing healthcare workers and recruit healthcare workers for COVID-19 research studies. It now includes over 55,000 people in every U.S. state who report on their perspectives and experiences via an online portal. Participants have reported in real-time their intentions to vaccinate, their feelings of moral injury and burnout, thoughts about returning to schools, and more. Through HERO, researchers conducted two important studies on COVID-19 prevention and vaccination.

Collaboration with the CDC: Researchers partnering with the U.S. Centers for Disease Control (CDC) are using PCORnet resources to shape the national understanding of COVID-19 by leveraging electronic health record (EHR) data that has been standardized to the PCORnet® Common Data Model. To date, researchers have used aggregated, de-identified data representing nearly half a million patients with a COVID-19 diagnosis and/or positive lab test to learn about patterns of infection, treatment effectiveness, vaccination, virus variants, healthcare utilization, and complications of infection and recovery.

RECOVER: PCORnet resources are furthering the goals of the NIH-funded Researching COVID to Enhance Recovery (RECOVER) initiative by developing large EHR databases to enhance our understanding of the epidemiology and risk of long-COVID. This PCORnet-enabled research program includes two teams focusing on children and adults respectively and working collaboratively to characterize risk factors for long-COVID.

“Each of these projects are distinct and really showcase the spectrum of PCORnet Network Partner strengths,” said Tom Carton of the Louisiana Public Health Institute, principal investigator for REACHnet, a PCORnet Network Partner, and an investigator with the CDC collaboration. All are enabled by PCORnet and centered around the needs of patients. This is only the beginning.”

Rapid and Collaborative Response to COVID-19

Posted on by Jodi Snare

Researchers responded rapidly and collaboratively to answer COVID-19 questions by using PCORnet resources including a flexible coordinating center, the PCORnet® Common Data Model, research-ready networks, and existing research studies that pivoted quickly. Researchers can use this resource to demonstrate how the resources of PCORnet can be used for studies that require fast answers.

Access the resource here.

CDC Uses PCORnet® Resources to Shape National Understanding of COVID-19

Posted on by Jodi Snare

Network Partners of PCORnet®, the National Patient-Centered Clinical Research Network, are leveraging their rich data to help answer important questions during the COVID-19 pandemic. One of the early collaborators with this work is the U.S. Centers for Disease Control and Prevention (CDC) in partnership with the Public Health Informatics Institute (PHII), a program of the Task Force for Global Health. Through this partnership (formally established in October 2020), PHII contracted with Harvard Pilgrim Health Care, a component of the PCORnet Coordinating Center responsible for developing and executing queries. Harvard Pilgrim Health Care is working with the other component of the PCORnet Coordinating Center and REACHnet to implement descriptive and advanced analytic queries across 43 PCORnet sites.

The CDC collaboration has been made possible through the efforts of PCORnet partners to rapidly adapt the PCORnet Common Data Model that captures and standardizes biweekly updates of patients with a diagnosis of COVID-19, a SARS-CoV-2 test, or other respiratory conditions. To date, aggregate data stripped of any personal identifying information related to nearly half a million patients with a COVID-19 diagnosis or SARS-CoV-2 test result have been shared with CDC.

“As a massive research network that can capture information from many healthcare systems, PCORnet has had an important role during a pandemic response,” said Tom Carton, current chair of the PCORnet Steering Committee. “The health records that underpin the PCORnet data infrastructure offer much more depth than the simple case reports with limited information that have been largely available to date. Via PCORnet, CDC and others are learning detailed surveillance information about the patterns of infection and course of the virus that is essential to help our leaders, institutions, and patients understand and combat this pandemic.”

“With our queries, we are able to capture information on patients with COVID-19 through diagnostic codes as well as lab test results,” said Jason Block, who is supporting efforts of the PCORnet Coordinating Center to better define COVID-19 using data accessible from the Network. “As a result, we are able to look at a large, representative sample of patients and get to the bottom of the characteristics of people who are getting infected and seeking care for this virus, predictors of who develops severe disease or complications, and whether there are long-term consequences of COVID-19 infection.”

“Our most recent queries are highlighting some interesting trends across COVID-19-postive patients,” said Block. “For example, we are seeing substantial changes in the use of medications for treatment of COVID-19. In hospitals, nearly all patients received hydroxychloroquine in the early phase of the pandemic; very few are receiving that treatment now, replaced by common use of remdesevir and dexamethasone. Also, we found that some of the early racial disparities in COVID-19 infection have decreased over time, as the pandemic has expanded across the entire population; important disparities still exist among hospitalized patients, with higher hospitalization rates among Black patients. It will be equally important to understand these trends as we continue to pursue vaccine adoption across the U.S.”

Block and his colleagues have begun discussions with CDC about potential options to track uptake of vaccines across the Network.

Networks like PCORnet protect patient data by keeping it safe within healthcare organizations and only sending de-identified, aggregated information from patient records through secure means to inform public health action. CDC continues to work with PCORnet leaders to determine how to best leverage data from a large network of healthcare organizations to support CDC’s COVID-19 response.

“At a time when the entire world is seeking answers to combat this pandemic, PCORnet’s Network Partners have rallied to collaborate with CDC as part of the solution,” said Pastor Bruce Hanson, a patient advocate serving on the PCORnet CDC COVID-19 Workgroup. “We are optimistic that we will glean many meaningful insights in the coming weeks and months.”

The team is working on disseminating those insights more broadly across healthcare and public health communities. Information on the type of data the team is gathering is currently shared publicly on GitHub. Stay tuned for more on the PCORnet-enabled COVID-19 response.