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.
Accepted for publication April 13, 2017
Correspondence Claire Snyder, PhD; csnyder@jhu.edu
Disclosures The authors report no disclosures/conflicts of interest.
Citation JCSO 2017 Nov 9 [Online first]
©2017 Frontline Medical Communications
doi https://doi.org/10.12788/jcso.0342
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Acknowledgments
The PRO Data Presentation Stakeholder Advisory Board includes Neil K Aaronson, PhD (Netherlands Cancer Institute, Amsterdam); Patricia A Ganz, MD (University of California-Los Angeles and Jonsson Comprehensive Cancer Center, Los Angeles, CA); Ravin Garg, MD (Anne Arundel Medical Center, Annapolis, MD); Michael Fisch, MD (MD Anderson Cancer Center, Houston, TX); Vanessa Hoffman, MPH (Bladder Cancer Advocacy Network, Washington, DC); Bryce B Reeve, PhD (University of North Carolina at Chapel Hill and Lineberger Comprehensive Cancer Center, Chapel Hill, NC); Eden Stotsky-Himelfarb (Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, Baltimore, MD); Ellen Stovall (National Coalition for Cancer Survivorship, Washington, DC [posthumous]); Matthew Zachary (Stupid Cancer, New York, NY).
The authors thank The Johns Hopkins Clinical Research Network site investigators and staff and, in particular, the patients and clinicians who participated in this project.
Supported by a Patient-Centered Outcomes Research Institute (PCORI) Award (R-1410-24904). All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of PCORI, its board of governors or methodology committee. Drs Snyder and Smith are members of the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins (P30 CA 006973). The funders had no role in the study design; data collection, analysis, or interpretation; writing; or decision to submit.
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