Patient-powered research networks: building capacity for conducting patient-centered clinical outcomes research.

ABSTRACT: 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. PPRNs will build on their foundation of trust within the patient communities and draw on their expertise, working with participants to identify true patient-centered outcomes and direct a patient-centered research agenda. The PPRNs will overcome common challenges including enrolling a diverse and representative patient population; engagin

SUBMITTER: PCORnet PPRN Consortium 

PROVIDER: S-EPMC4078295 | biostudies-literature | 2014 Jul-Aug

REPOSITORIES: biostudies-literature