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Front. Public Health | doi: 10.3389/fpubh.2018.00343

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

  • 1University of Memphis, United States
  • 2Division of Health Systems Management and Policy, School of Public Health, University of Memphis, United States
  • 3Department of Communication, College of Communication and Fine Arts, University of Memphis, United States

This paper reviews the implementation of the UNITE for Better Health Outcomes Eugene Washington PCORI Engagement Award project using Mullins and colleague’s 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.

Keywords: Patient engagement (PE), patient centered outcomes research, Mullins Framework, Hard-to-reach groups, cancer disparities

Received: 29 Aug 2018; Accepted: 05 Nov 2018.

Edited by:

Dr. Warren G. McDonald, Methodist University, United States

Reviewed by:

Jeff Bolles, University of Mount Olive, United States
Rick Kates, University of Florida, United States  

Copyright: © 2018 Powell, Young and Kim. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Dr. M P. Powell, University of Memphis, Memphis, United States,