PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). PCORnet will transform clinical research by engaging patients, care providers and health systems in collaborative partnerships that leverage health data to advance medical knowledge and improve health care. PCORnet will bring together health research and healthcare delivery, which have been largely separate endeavors. By doing so, this national health data network will allow us to explore the questions about conditions, care and outcomes that matter most to patients and their families.
PCORnet represents a unique opportunity to make a real difference in the lives of patients and their families. Until now, we have been unable to answer many most important questions affecting health and healthcare. But by combining the knowledge and insights of patients, caregivers, and researchers in a revolutionary network with carefully controlled access to rich sources of health data, we will be able to respond to patients’ priorities and speed the creation of new knowledge to guide treatment on a national scale.
PCORnet integrates health data for studies and catalyzes research partnerships among two types of networks: Clinical Data Research Networks (CDRNs), which are based in healthcare systems such as hospitals and health centers, and Patient-Powered Research Networks (PPRNs), which are run by groups of patients and their partners who are focused on one or more specific conditions or communities, and who are interested in sharing health information and participating in research. Their efforts are supported by a Coordinating Center.
The PCORnet Council, the main governing body of PCORnet, the National Patient-Centered Clinical Research Network, has approved three individuals to serve as the first chairs of the network’s new Data, Engagement, and Research Committees.
In an article in Kaiser Health News, Guy Gugliotta discusses how PCORI as an independent organization charged with bringing health care professionals and patients together in cooperative research ventures to find the best treatments for ailments ranging from diabetes to depression, and last month opened the second phase of a program (PCORnet) to create research networks covering specific diseases and involving millions of patients across the country.
The PCORnet Summit is open to all PCORI Annual Meeting attendees and will focus around the following key themes that best highlight a “network of networks” transforming clinical research: innovation and collaboration; breakthrough solutions to major problems in research; and meaningful patient experiences and engagement. If you can’t make the meeting follow @PCORnetwork during the summit for more information.