So much more than a “pair of brown shoes”: Triumphs of patient and other stakeholder engagement in patient-centered outcomes research

Abstract

This piece illustrates the “real world” experiences of patients and other stakeholder partners in research to help inform and inspire future patient-centered outcomes research (PCOR) efforts. The Patient-Centered Outcomes Research Institute (PCORI) was created in 2010 to fund research that helps patients, clinicians, and other healthcare stakeholders make informed health decisions. The first 50 funded PCORI Pilot Projects engaged patients, caregivers, parents, patient advocates, clinicians, and other non-traditional research stakeholders to serve in advisory and leadership positions on their research teams, many for the first time. In interviews with seven patients and other stakeholders, several lessons learned emerged, including how to build confidence over the course of a research project; how to offer translation and interpretation insights reflective of practical experience; how to understand the benefits and limitations to stakeholder participation; and how to positively influence the research process and study outcomes. By the completion of their Pilot Projects, the stakeholder partners profiled here considered themselves “empowered” research contributors. The authors are hopeful these stories will encourage more patients and other stakeholders to contribute their time and experiential learnings to improve the process, and results of, PCOR.

Keywords

• patient engagement
• stakeholder engagement
• patient-centered outcome research