PROMISE OF REAL-WORLD DATA NETWORKS: INNOVATIONS IN TRIAL DESIGN USING PCORNET®
Author(s)
Lauren W. Cohen, MA1, Adrian F Hernandez, MD, MHS2, Neha Pagidipati, MD, MPH2, Keith Marsolo, PhD2;
1Durham, NC, USA, 2Duke Clinical Research Institute, Durham, NC, USA
1Durham, NC, USA, 2Duke Clinical Research Institute, Durham, NC, USA
Presentation Documents
OBJECTIVES: PCORnet®, The National Patient-Centered Clinical Research Network is designed to empower people to make informed health care decisions by enabling clinical research that is faster, easier, less costly and, most importantly, more relevant to their needs. PCORnet is a large, highly representative, national “network of networks” that collects data routinely gathered in a variety of health care settings, including hospitals, doctors’ offices, and community clinics. PCORnet operates as a learning health system that has implemented shared practices across nearly 80 health systems totaling over 13,000 individual hospitals and clinics.
METHODS: In the spirit of continuous quality improvement, PCORnet collects progress metrics on a monthly basis, including those related to EHR data quality, study start-up times, and recruitment. This presentation will share data related to the successes and limitations of these innovations.
RESULTS: In 2024, there were over 47 million unique patient encounters at a PCORnet site. These patient encounters have enabled over $1 billion in research funding from not only PCORI, but also federal and private agencies. The sites in PCORnet demonstrate variability in research delivery and improvement over time, but also have provided model practices to enable average clinical trial start-ups of less than 90 days and improvements in data quality and capture from the EHR.
In addition, we will present the results from a survey of PCORnet sites to understand the challenges for rapid study start-up, beyond the usual 'black box' broadly attributed to delays in IRB and contracting.
CONCLUSIONS: We will focus on the best practices identified through over 10 years of innovation in the PCORnet Network, as well as discuss what is truly needed in the coming years to create a true learning health system.
METHODS: In the spirit of continuous quality improvement, PCORnet collects progress metrics on a monthly basis, including those related to EHR data quality, study start-up times, and recruitment. This presentation will share data related to the successes and limitations of these innovations.
RESULTS: In 2024, there were over 47 million unique patient encounters at a PCORnet site. These patient encounters have enabled over $1 billion in research funding from not only PCORI, but also federal and private agencies. The sites in PCORnet demonstrate variability in research delivery and improvement over time, but also have provided model practices to enable average clinical trial start-ups of less than 90 days and improvements in data quality and capture from the EHR.
In addition, we will present the results from a survey of PCORnet sites to understand the challenges for rapid study start-up, beyond the usual 'black box' broadly attributed to delays in IRB and contracting.
CONCLUSIONS: We will focus on the best practices identified through over 10 years of innovation in the PCORnet Network, as well as discuss what is truly needed in the coming years to create a true learning health system.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
RWD48
Topic
Real World Data & Information Systems
Topic Subcategory
Distributed Data & Research Networks
Disease
STA: Multiple/Other Specialized Treatments