A National Resource for Making Patient-Centered Research More Efficient
PCORI funded the development of PCORnet®, The National Patient-Centered Clinical Research Network, to address an urgent, national need—capacity to conduct patient-centered outcomes research faster, more efficiently, and at lower cost, by leveraging the power of health data, reusable research infrastructure, and patient partnerships.
PCORnet addresses several challenges of traditional clinical research, including the time and expense involved in developing a study, the scarcity of data on certain rare conditions or underserved populations, and the recognition that many studies don’t answer the questions most important to patients. All these issues can lead to study results that are of limited use to patients and others across the healthcare community.
In the traditional research environment, researchers, patients, clinicians, data, and health systems each operate in their own silos. In PCORnet, they unite in a “network of networks.” PCORnet infrastructure enables connections to engaged patient partners, clinicians, health system leaders and researchers and generates efficiencies through reusable and shared resources for study activities.
PCORnet consists of eight Clinical Research Networks (CRNs) supported by PCORI. CRNs consist of two or more healthcare systems, including hospitals, integrated delivery systems, and federally qualified health centers. There are more than forty health systems participating in PCORnet through the CRNs. The CRNs transform data gathered from routine patient care across their participating health systems into a consistent format, the PCORnet Common Data Model, to enable rapid response to research-related questions. The Coordinating Center for PCORnet maintains the PCORnet Common Data Model and serves as a central hub for the Network, bringing the diverse PCORnet networks, institutions, and patients together through shared communications, meetings, and initiatives. Patient partners participate in PCORnet governance as well as all phases of the research process.
The PCORnet Common Data Model developed by PCORnet Network Partners is a key component of the Network’s infrastructure and is central to their work. The PCORnet Common Data Model standardizes millions of data points from a variety of clinical information systems into an innovative common format that can be used for specified research projects.
PCORnet Network Partners use a distributed research network model that facilitates trust among participating health systems, clinicians, and patient partners. In a distributed research network model, the research question or query goes to the data and aggregate results are returned. The entire process is performed locally at each site. The data remain at each site behind institutional firewalls, maintaining security.
To learn more about the PCORnet Common Data Model, click here.
To learn more about PCORnet data security and privacy, click here.
PCORnet infrastructure resources include capacities to conduct large studies, including with cohorts that would otherwise be hard to find in the general population. This is a function of its access to secure, curated data from 60 million patients who have had an interaction with a Network Partner site in the past 5 years. These data are accessible for observational studies. About 30 million individuals who have had an interaction with a Network Partner site in the past year across diverse clinical settings could be invited to participate in clinical trials.
To learn more about research utilizing the PCORnet infrastructure, click here.
PCORnet Network Partners are committed to sharing resources, tools, and best practices. Explore the available research, data, and engagement resources on the PCORnet Website.
To learn more about the PCORnet Partner Networks, click here.
Posted: December 16, 2013; Updated: February 18, 2022
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