PCORnet®: A National Resource for Patient-centered Health Research.
Kimberly Marschhauser, Claudia Grossmann, Emily Abbruzzi, Rachel Hemphill, Laura Forsythe, Erin Holve
Abstract
Open AccessBACKGROUND: PCORnet is a large, federated "network of networks" that facilitates innovative patient-centered comparative clinical effectiveness research (CER) and other health research at a national scale. As a flagship infrastructure program funded by the Patient-Centered Outcomes Research Institute® (PCORI®), an independent, nonprofit research organization, PCORnet is unique among national clincial research networks given the scale of the network. With linkages to more than 47 million unique patients, strong governance, research expertise, and commitment to keeping the patient at the center of all activities, PCORnet can be used to conduct a range of study types, from pragmatic trials to observational studies. Since 2015, PCORnet has been used to conduct more than 250 studies, ranging from observational research to pragmatic trials. OBJECTIVE: The main objective of this commentary is to provide PCORI's perspective on the importance of clinical research infrastructure, the unique contributions of the PCORnet infrastructure to patient-centered research, and PCORI's approach to continuous evaluation and evolution of PCORnet. RELEVANCE TO THE SPECIAL ISSUE: This commentary aims to be useful to readers in understanding PCORI's vision for PCORnet and approach to monitoring progress and measuring success.