COVID-19 has upended life globally, and the need for patient-centered insights and answers has never been more pronounced. Leadership of PCORnet®, the National Patient-Centered Clinical Research Network, is responding with bold action by creating a COVID-19-specific Common Data Model (CDM). The new CDM will allow researchers to use information gathered from patients across PCORnet’s vast network to better define and understand who is getting infected with SARS-CoV-2 and how the virus affects them.
“PCORnet is one of very few data resources with the scope and infrastructure to support the nation’s needs for fast answers to important questions during this pandemic,” said Keith Marsolo, who is co-leading the development of the CDM. “We are unleashing the Network’s full potential to combat this crisis, and that includes the development of a COVID-19-specific CDM that transforms data across the Network into a research-ready state to power critical studies and rapidly inform the nation’s response.”
CDMs standardize millions of data points generated from patient visits at clinics and hospitals into a common language that can be used for research while securely protecting personal patient information behind firewalls. Development of a CDM specific to COVID-19 is important because a lot of the existing data on patients with COVID-19 has come from varied sources, which lack the rich clinical details that the research community needs to determine the best response to this pandemic.
“Patients are seeking meaningful answers to the COVID-19 pandemic, and that is going to require an in-depth look at who this virus infects, how it spreads, and how it responds to treatment,” said Pastor Bruce Hanson, patient advocate. “This new CDM enabled by PCORnet will set the stage for that type of research, unlocking details that will empower our nation to address the pandemic as swiftly and accurately as possible.”
To ensure they are keeping pace with the fast-moving pandemic, hospitals and clinics within PCORnet networks are updating their data weekly for patients with a respiratory illness or lab order for a COVID-19 test. They will use that data to better understand the characteristics COVID-19 patients share, allowing researchers to more quickly identify infected patients and understand their experience with the virus. With new symptoms of COVID-19 coming to light on a near-daily basis, the insights from these data will be important to help fight the pandemic.
“While the immediate goal of the PCORnet COVID-19 CDM is to quickly initiate a basic snapshot of infected patients, the CDM’s long-term potential is much more exciting,” said Jason Block, who is co-leading the effort to better define COVID-19 using data accessible from the Network. “As we evolve the CDM, we will be able to characterize COVID-19 patients over time for more in-depth analyses across the disease course.”