The Patient-Centered Outcomes Research Institute (PCORI) just approved $93.5 million to support 29 clinical research data networks to form a resource to be known as the “National Patient-Centered Clinical Research Network” or referred to as PCORnet.
PCORnet is envisioned to be a secure national data network that will improve the speed, efficiency, and use of Patient-Centered Comparative Effectiveness Research (CER). By integrating the data available in the 29 individual networks, PCORnet aims to provide access to a large amount of diverse and nationally representative health information to support a range of study designs.
Researchers and patients, clinicians, and end users of study results will be able to interact directly and jointly determine research priorities. PCORnet aims to advance clinical research from investigator-driven to patient-centered studies.
The first of the two awards included in the funding will enable eleven Clinical Data Research Networks (CDRN), partnerships among health clinics, hospitals, and other health systems to collect and use information from multiple data sources such as EHRs.
PCORI’s second award will fund eighteen Patient-Powered Research Networks (PPRNs formed by patients and their partners to promote information exchange on a particular condition to help find the answers to improve their health outcomes.
The networks will collect and store data under rigorous security protocols and share data across networks by using a variety of methods to prevent patient identification and to ensure confidentiality.
During the eighteen month development phase, award recipients will expand and improve their individual systems, work to standardize their data, and develop policies to govern data sharing, security, and privacy. They will also recruit patients and other stakeholders to participate in research. By the end of this phase, PCORI expects a functional research network to be in place to support CER studies.
A Coordinating Center jointly led by Harvard Pilgrim Health Care Institute and Duke Clinical Research Institute will provide the CDRNs and PPRNs expert guidance and management as they integrate into the larger network.
For more information, go to www.pcori.org.