The People-Centered Research Foundation (PCRF) is working with Datavant to advance its National Patient-Centered Clinical Research Network (PCORnet), which is made up of more than 70 academic medical centers, community hospitals, clinics, and health plans.
Through its partnership with Datavant, PCORnet aims to enhance its ability to accelerate research, while maintaining patient privacy.
“The focus is specifically on linking together the research networks and sites that compose PCORnet on a de-identified basis,” said Travis May, Datavant CEO, adding that work is already underway.
“Generally, each of these research networks seeks to link data within its particular geographic area, or, if focused on a particular practice area, within that practice area,” he explained.
However, as May said, this is often not enough to get data on patient populations of interest, such as pediatric patients with rare diseases, which requires looking across data from many institutions.
“Linking all of this data will empower medical researchers that are trying to better understand population health, the incidence and trajectory of disease, the impact and safety of therapeutic innovations, and the utility of different approaches to care delivery,” he added.
PCORnet members also will have the option to join Datavant's data ecosystem, which includes hundreds of de-identified datasets. According to the company, it is designed to facilitate bilateral data sharing while protecting patient privacy.
"In order to realize the full promise of PCORnet, it is necessary for us to reliably link patient data across research networks, institutions and health plans while protecting patient privacy," said Donna Cryer, interim executive director of PCRF, in a statement. "We look forward to collaborating as PCORnet continues to build the nation's largest clinical research network to power people-centered research.”