A Journey in Capacity Building: Revisiting the Mullins Framework for Meaningfully Engaging Patients in Patient Centered Outcomes Research

Abstract

Read online

This paper reviews the implementation of the UNITE for Better Health Outcomes Eugene Washington PCORI Engagement Award project using Mullins and colleagues' Framework for Meaningfully Engaging Patients in Patient Centered Outcomes Research (PCOR) and the advantages and disadvantages of this framework. We combine Mullins' framework with the ten themes for guiding future studies in PCOR also developed by Mullins' research group. We interviewed patient stakeholders at the end of the engagement award and include patient stakeholder perspectives of how well we performed each of these steps. Despite some breakdowns in trust, which were eventually repaired, we successfully identified patient and family stakeholders; built partnerships with patients, researchers, providers, and community groups; explained the purpose of our project and the importance of PCOR; developed training materials for patients and providers; and updated our key constituents throughout the process. Overall, we believe combining Mullins' framework with the ten themes provides a solid roadmap for implementing a PCORI engagement award. Our main challenge was recruiting and keeping hard-to-reach patients and caregivers involved in the project. We believe this was due to our limitations more so than the framework. Based on the lessons we learned, we provide concrete recommendations for others who want to engage hard-to-reach patients using the Mullins framework.

Keywords

• patient engagement
• patient centered outcomes research
• mullins framework
• hard-to-reach patients
• cancer disparities