Facilitators and barriers to engaging patient partners in knowledge syntheses: A stage-based approach.

Abstract

Knowledge synthesis involves bringing together findings from individual research studies to answer a specific question or explore a particular topic, often at a global level. People with lived or living experience of health conditions or of accessing healthcare services (PWLE), such as patients and their families or friends, can provide valuable perspectives throughout this process. PWLE involvement can help shape the design and conduct of a knowledge synthesis to better reflect real-world concerns through a process called patient engagement. Patient engagement is the meaningful and active involvement of PWLE throughout the research process. While previous research shows that PWLE can contribute meaningfully when appropriate supports are in place, there is limited practical guidance on how to enact patient engagement in knowledge syntheses. This tutorial paper aims to guide researchers and PWLE who would like to engage in knowledge syntheses together. Building on existing research, our team (comprised of PWLE, researchers, and an academic librarian) shares lessons we have learned from working together throughout the stages of a knowledge synthesis. We present considerations for successful patient engagement when research teams are: (1) planning to engage, (2) recruiting PWLE, (3) establishing roles and rapport, (4) supporting capacity development, (5) conducting the knowledge synthesis, and (6) mobilizing findings. We also identify 12 common barriers to patient engagement and offer strategies to address them, alongside recommendations for integrating PWLE across every stage of the knowledge synthesis process.