Patient engagement in patient-centered outcomes research: challenges, facilitators and actions to strengthen the field

Abstract

Aim: To describe challenges to and facilitators of patient engagement to inform future strategies and suggested actions to strengthen engagement. Methods: Interviews with 19 principal investigators of projects funded by the Patient-Centered Outcomes Research Institute and with 33 patients from 18 of the 19 projects. Results: Facilitators included using existing resources, having clear goals, educating patients and treating patients respectfully. Logistical challenges included extra time and work, institutional barriers and difficulty having meetings. Substantive challenges to selecting, educating and engaging patients, and incorporating feedback were also reported. Conclusion: To bolster the infrastructure for engagement, we suggest funders, institutions and researchers focus on resources and training for researchers and patients, networks and programs to connect stakeholders and model policies.