PCORI was created to fund research to provide information about the best available evidence that can help patients and those who care for them make better-informed decisions. However, the nation’s capacity to conduct patient-centered comparative effectiveness research (CER) quickly and efficiently remains extremely limited. To address this issue, PCORI is committed to improving the nation’s capacity to conduct CER efficiently, by creating a large, highly representative electronic data infrastructure for conducting clinical outcomes research.
Building a National Patient-Centered Clinical Research Network
On April 23, 2013, we shared our vision for a National Patient-Centered Clinical Research Network that has the potential to improve national capacity to conduct CER. Concurrently, we announced the release of cooperative agreement funding announcements to support two components of this network, The Clinical Data Research Network (CDRN) Funding Announcement, which will provide support for up to eight networks of at least two health care systems (such as health plans and care delivery systems), and the Patient-Powered Research Network (PPRN) Funding Announcement, which will provide support for up to 18 organizations led by patients who have or are interested in forming a research network and participate in observational and randomized research. As of July 15, 2013, all organizations that had submitted Letters of Intent (LOIs) for the CDRN or PPRN Funding Announcement have been informed whether they are invited to submit a full application.
On June 5, 2013, we launched a request for proposal for the third component of this network. The Coordinating Center will provide technical and logistical support to the CDRNs and PPRNs funded through the companion contracts, and will be responsible for executing the recommendations and policies of the governing bodies of the national network.
Related Activities: To better understand the opportunities and challenges associated with building a national, sustainable research network for patient-centered outcomes research (PCOR) and prepare funding opportunities to support this work, PCORI undertook the following activities:
- Convening of a National Workshop to Advance the Use of Electronic Data with nearly 100 expert stakeholders from a wide range of institutions including key agencies within the Department of Health and Human Services, academia, non-governmental agencies, the private sector, and representatives from patient and provider groups to discuss how PCORI should best facilitate the creation of a national data infrastructure to support high-quality patient-centered outcomes research. National Workshop Report: Advancing the Use of Electronic Data in Patient-Centered Outcomes Research.
- Issuing a Request for Proposal (RFP) for a Comprehensive Inventory of Research Networks and selected University of California San Diego (UCSD) to conduct this review. Report: Comprehensive Inventory of Research Networks: Clinical Data Research Networks, Patient-Powered Research Networks, and Patient Registries
- Issuing a Request for Information (RFI) for Input on Research Networks, inviting stakeholders from the broad healthcare community to provide information on existing health and healthcare data networks and the potential applications of these networks to support high-quality PCOR. Summary of Responses from a Request for Information: Input on Research Network.