Under the auspices of our Research Infrastructure program, we are creating a national network to foster a wide range of observational and experimental comparative clinical effectiveness research (CER) studies. This network, known as PCORnet, the National Patient-Centered Clinical Research Network, is designed to find a faster, less expensive, more powerful way to conduct CER to improve the nation’s health and health care.
This “network of networks” can harness the power of large amounts of health information, including data from electronic health records, while taking advantage of strong partnerships between patients, clinicians, and health systems. Such a national network, guided by the wide range of healthcare stakeholders, enables researchers to efficiently address the real-world needs of patients and those who care for them.
This large infrastructure can support researchers conducting large observational studies that include clinical and patient-reported outcomes and also large, pragmatic clinical trials embedded within participating systems. The network is implementing streamlined contracting, data sharing, and Institution Review Board review protocols to increase efficiency.
The Research Infrastructure program funds and manages the 33 partner networks and a Coordinating Center that make up PCORnet. There are 13 Clinical Data Research Networks (CDRNs), based in healthcare systems such as hospitals, integrated delivery systems, and federally qualified health centers, and 20 Patient-Powered Research Networks (PPRNs), operated and governed by groups of patients and their partners focused on one or more specific conditions or communities, and interested in sharing health information and participating in research.
Several demonstration studies are under way to answer important questions while testing the technical capacity and function of the PCORnet’s infrastructure:
- Patient-Powered Research Networks (PPRN) Research Demonstration Projects
- Obesity Observational Research Initiative
- Optimal Maintenance Aspirin Dose for Patients with Coronary Artery Disease
- The Natural Experiments Network: A Collaborative Initiative
PCORnet also plans to increase network collaborations within PCORnet and with the wider research community. The Research Infrastructure program has championed demonstration projects to enhance network development and manages collaborations with federal partners.
Patients and other stakeholders are deeply involved in the development and implementation of network activities. When fully realized, PCORnet will improve the pace, quality, and patient-centered nature of clinical research.
Posted: February 25, 2016; Updated: May 2, 2016