Facilitators and Barriers to Patient-Centered Outcomes Research Partnership Sustainability in the United States

Abstract

Purpose: Engaging patients in research can enhance relevance and accelerate implementation of findings. Despite investment in patient-centered outcomes research (PCOR), short-term funding cannot maintain such efforts beyond the program timeframe. Sustained interaction between researchers, practitioners, patients, and other stakeholders is needed to sustain use of evidence-based practices and achieve maximum benefit. While previous literature describes components of public health program sustainability, such factors do not necessarily apply to the partnerships that implement those programs, and facilitators are likely to differ across disciplines. We sought to determine facilitators and barriers to PCOR partnership sustainability from participant experiences with sustainable and unsustainable community-academic partnerships across the United States. Methods: From 2017 to 2019, a collaboration representing public health institutes, community-based organizations, and academic organizations convened PCOR partnership members in virtual focus groups and conducted qualitative analysis to identify facilitators and barriers to partnership sustainability. A grounded theory framework, which applied a combination of a priori codes (barriers, facilitators, sustainable, not sustainable) and open coding, guided participant selection, data collection, and analysis across all project stages. Results: There was no single definition of partnership sustainability. Common facilitators of sustainability were investing time in relationships, connector role to promote communication and trust, equal power dynamics, shared motivation for participation, partnership institutionalization, and reciprocity. Barriers to partnership sustainability included external factors influencing participation and operations, funding-related challenges, and lack of institutionalization. Conclusions: PCOR partnerships should incorporate an early and ongoing focus on relationship development through intentional efforts to collaborate with specific partners and stakeholders according to the goals of the research. This would allow more patients to access the evidence-based practices resulting from research investments.

Keywords

• program sustainability
• patient-centered care
• program evaluation
• focus groups
• pcor