Lessons on Patient and Stakeholder Engagement Strategies for Pipeline to Proposal Awards

Abstract

The Patient Centered Outcomes Research Institute (PCORI) supports patient-centered clinical comparative effectiveness research (CER) including health disparities and engagement portfolios. In 2013, PCORI launched the Pipeline to Proposal (P2P) mechanism to support development of novel patient- and stakeholder-centered partnerships focused on designing clinical CER funding proposals. By providing a tiered structure of successive small contracts and technical assistance, the P2P mechanism encourages development of new research partnerships among diverse stakeholders. As a comparatively new field, patient-centered outcomes research (PCOR) has few well-delineated methods for engaging patients and other non-scientists in effective teams with academics or clinicians to develop and implement rigorous, scientific research proposals. Community partnered participatory research (CPPR) provides a useful framework for structuring new partnerships. In this article we highlight the origins, development, and prospects of three current examples of funded P2P initiatives based in New Orleans and Los Angeles. We outline how these projects - Prisoner to Patient, the NOLA Partnership, and Resilience Among African American Men - use CPPR principles. We also describe how they have collaborated with, and contributed to, a two-way learning and knowledge exchange among members of the PCORI-funded Community and Patient Partnered Research Network. Lessons learned may be applicable to other groups planning to create new partnerships focused on implementing PCOR.

Keywords: Community Partnered Participatory Research; Community-Academic Partnership; Health Disparities Research; PCORI; Patient Centered Outcomes Research.