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.