Conceptual and practical foundations of patient engagement in research at the patient-centered outcomes research institute

Abstract

PURPOSE: To provide an overview of PCORI's approach to engagement in research. METHODS: The Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 to fund patient-centered comparative effectiveness research. Requirements for research funding from PCORI include meaningful engagement of patients and other stakeholders in the research. PCORI's approach to engagement in research is guided by a conceptual model of patient-centered outcomes research (PCOR), that provides a structure for understanding engagement in research. RESULTS: To understand and improve engagement in research PCORI is learning from awardees and other stakeholders. Those efforts are described along with PCORI's capacity building and guidance to awardees via the Engagement Rubric. PCORI's unique model of engaging patients and other stakeholders in merit review of funding applications is also described. Additional support for learning about engagement in research is provided through specific research funding and through PCORI's major infrastructure initiative, PCORnet. CONCLUSION: PCORI requires engagement of stakeholders in the research it funds. In addition PCORI engages stakeholders in activities including review of funding applications and establishment of CER research infrastructure through PCORnet. The comprehensive approach to engagement is being evaluated to help guide the field toward promising practices in research engagement.