Health Policy Archives - The National Patient-Centered Clinical Research Network

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.”

With access to coordinated heath data from more than 70 million people across the United States, PCORnet®, the National Patient-Centered Clinical Research Network, is a key resource in the fight against COVID-19. To maximize its utility, the Patient-Centered Outcomes Research Institute (PCORI) offered enhancement funding for nine existing PCORnet-enabled research studies. The idea behind these enhancement awards is to leverage existing infrastructure from PCORI-funded research to more efficiently expand understanding of COVID-19 and address this public health crisis.

One of many lessons learned from the COVID-19 pandemic is that good public health decisions in times of crisis require fast analysis of diverse patient data. While many healthcare organizations across the U.S. have the capacity to use their electronic health records (EHRs) and claims data as tools for horizon-scanning and disease surveillance, few offer the infrastructure to support the large-scale integration needed in the pandemic. The coordinated, interoperable infrastructure of PCORnet supports that needed speed and efficiency.

Following are a few snapshots of how PCORI-funded enhancement awards are supporting the use of PCORnet to combat the pandemic:

The Identifying and Predicting Patients with Preventable High Utilization project initially set out to use PCORnet to better understand and support people who frequently visit health care systems. With a COVID-19 enhancement award from PCORI, the research team will use the project’s existing infrastructure to develop prediction models to plan for resource needs and improve outcomes for patients hospitalized with COVID-19.
Variation in Case Management Programs and Their Effectiveness in Managing High-Risk Patients for Medicare ACOs, a project using PCORnet resources to improve case management programs in health systems, is expanding its scope to understand how the pandemic-driven shift to telehealth is affecting care and health outcomes for older patients with multiple chronic health problems.
Comparing Ways for Patients and Clinics to Improve Blood Pressure Control seeks to monitor how well clinics and patients are controlling blood pressure. With its enhancement award, it will use the same PCORnet-enabled cohort of patients to examine how taking different types of blood pressure medicines affects patients’ risk for contracting COVID-19 and severity of infection.
As patients with type 2 diabetes may have a higher risk of severe COVID-19 infections, the project team for Comparing Medicines for Treating Type 2 Diabetes among Patients with Chronic Kidney Disease is using its established data resources enabled by PCORnet to look at whether people with type 2 diabetes have a higher risk of COVID-19-related hospital stays. The team is also comparing rates of COVID-19 hospital stays for people who take different diabetes medicines.
Improving Methods for Extracting Data from Clinicians’ Notes in Electronic Health Records is working to create better methods for obtaining data from PCORnet-accessible EHR notes using natural language processing, or NLP. With NLP, computer programs interpret written language and make it easier to sort and study. With its enhancement award, the project team will use that same NLP technology to examine unstructured clinician notes for COVID-19 patients in an effort to glean new insights that may not be captured in a structured EHR record.
Understanding How Health Policy Affects Weight Loss Counseling and Diabetes Care set out to use PCORnet data resources to understand how the Affordable Care Act’s policy for insurance companies to pay for obesity screening and counseling affects the health of people with, or at risk for, diabetes. Now, it has expanded its scope to better understand outcomes related to the transition to virtual visits for patients with, or at high risk of, diabetes before, during, and after COVID-19.
An established PCORnet-enabled study was working to answer the question: Does Paying Doctors to Virtually Provide Chronic Care Management Improve Health for People with Diabetes Who Have Medicare Coverage? PCORI’s enhancement award is now allowing the team to also look at COVID-19 outcomes for people with type 2 diabetes who have at least one additional chronic disease and are covered by Medicare.
The scope of the Comparing Two Ways to Promote Healthy Weight Gain and Prevent Obesity in Early Childhood project expanded with a COVID-19 enhancement award. Now, the team is also using PCORnet to look at the impact of COVID-19 on families in the study who are participating in the Greenlight and Greenlight Plus programs, two interventions to support parents with low health literacy.

For more information about PCORI’s enhancement awards for COVID-19 research, check out the PCORI funding website.

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