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

Paul Avillach, Janice Buelow, Richard Colletti, Florian Eichler, Seth Ginsberg, Esi Morgan Dewitt, Peter Margolis, Michael Seid, Robert McBurney, Peter A. Merkel, Richard Mularski, Marc Natter, Andrew A. Nierenberg, Liz Horn, Megan O'Boyle, Holly Peay, Mark Pletcher, Susan Redline, Bruce Robinson, Michael D. KapplemanR. Balfour, Kathleen E. Sullivan, Sue Friedman, Rebecca Sutphen, Sharon F. Terry, John Walsh, Sarah E. Daugherty, Sarita Wahba, Rachael Fleurence

Research output: Contribution to journalArticle

35 Scopus citations

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; engaging patients in governance; designing the data infrastructure; sharing data securely while protecting privacy; prioritizing research questions; scaling small networks into a larger network; and identifying pathways to sustainability. PCORnet will be the first distributed research network to bring PCOR to national scale.

Original languageEnglish (US)
Pages (from-to)583-586
Number of pages4
JournalJournal of the American Medical Informatics Association
Volume21
Issue number4
DOIs
StatePublished - Jan 1 2014

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ASJC Scopus subject areas

  • Health Informatics

Cite this

Avillach, P., Buelow, J., Colletti, R., Eichler, F., Ginsberg, S., Dewitt, E. M., Margolis, P., Seid, M., McBurney, R., Merkel, P. A., Mularski, R., Natter, M., Nierenberg, A. A., Horn, L., O'Boyle, M., Peay, H., Pletcher, M., Redline, S., Robinson, B., ... Fleurence, R. (2014). Patient-powered research networks: Building capacity for conducting patient-centered clinical outcomes research. Journal of the American Medical Informatics Association, 21(4), 583-586. https://doi.org/10.1136/amiajnl-2014-002758