Partnering with stakeholders using an example patient-reported outcomes project

The increasing emphasis on engaging stakeholders to conduct patient-centered outcomes research challenges research teams to collaborate with patients and other key groups in new ways. We describe innovative approaches we employed to partner with stakeholders using the example of a patient-centered outcomes research project addressing the graphic display of patient-reported outcomes (PRO) data. PROs represent the patient's perspective on the impact of health, disease, and treatment without interpretation by a clinician or anyone else. PROs can play an important role in promoting patient-centered cancer care. Due to variations in PRO measures used, in how these measures are scored and scaled, and in the way the data are presented, patients and clinicians have difficulty understanding what the PRO data mean, thereby creating a critical barrier to their application in oncology practice. We conducted a three-part study to identify attributes of graphic displays of PRO data that are helpful and confusing; develop improved PRO data presentation approaches, and evaluate the accuracy-of-interpretation and clarity of the developed approaches. Stakeholders, including cancer survivors and caregivers, cancer care providers, and PRO researchers, were involved in this effort in multiple ways, including providing the rationale for the research project, contributing to the study design and implementation, and collaborating on the implementation and dissemination strategy.