Posted by ImproveCareNow on May 12, 2014
PCORnet PPRN Consortium, Daugherty SE, Wahba S, Fleurence R (2014). Patient-powered research networks: building capacity for conducting patient-centered clinical outcomes research. Journal of the American Medical Informatics Association 21, pg. 383-6.
The Patient-Centered Outcomes Research Institute (PCORI) recently launched PCORnet to establish a single inter-operable multicenter data research network that will support observational research and randomized clinical trials. This paper provides an overview of the patient-powered research networks (PPRNs), networks of patient organizations focused on a particular health condition that are interested in sharing health information and engaging in research.