title: Implementing a pragmatic framework for authentic patient-researcher partnerships in clinical research.
abstract: In response to the creation of the Patient-Centered Outcomes Research Institute in 2010, researchers have begun to incorporate patient and family stakeholders into the research process as equal partners, bringing their unique perspectives and experiences to the table. Nonetheless, there is a dearth of literature around how best to engage patients and families and many barriers to doing so effectively. This paper outlines a pragmatic framework of collaborative engagement and partnership between research investigators and patient and family advisors from existing patient and family advisory councils (PFACs) at an academic medical center. This framework includes the role for each party throughout the clinical research process (launch, hypothesis, specific aims, measures/methods, results, interpretations/recommendation and dissemination).
authors.affiliation: Center for Patients & Families, Brigham & Women's Hospital, 75 Francis Street, Boston, MA 02115, USA.
authors.forename: Maureen B
authors.initials: MB
authors.lastname: Fagan
authors.affiliation: Center for Patients & Families, Brigham & Women's Hospital, 75 Francis Street, Boston, MA 02115, USA.
authors.forename: Constance Rc
authors.initials: CR
authors.lastname: Morrison
authors.affiliation: Center for Patients & Families, Brigham & Women's Hospital, 75 Francis Street, Boston, MA 02115, USA.
authors.forename: Celene
authors.initials: C
authors.lastname: Wong
authors.affiliation: Center for Patients & Families, Brigham & Women's Hospital, 75 Francis Street, Boston, MA 02115, USA.
authors.forename: Martha B
authors.initials: MB
authors.lastname: Carnie
authors.affiliation: Department of Medicine, University of California-San Diego, 9500 Gilman Drive, La Jolla, CA 92093, USA.
authors.forename: Paulette
authors.initials: P
authors.lastname: Gabbai-Saldate
mesh_terms: D003142:Communication; D006801:Humans; D063868:Patient Outcome Assessment; D012106:Research; D012108:Research Personnel
keywords: patient engagement; patient-centered care; patient-centered outcomes research