Group Concept Mapping As A Strategy for Defining Patient-Centered Outcomes In Proms and Pro-Pms

Abstract

Although patient engagement in health research is commonly recognized as a priority, there is a lack of guidance regarding appropriate and feasible methods for defining patient-centered outcomes. This is critical when developing both patient-reported outcome measures (PROMs) and PRO-based performance measures (PRO-PMs). One area that has been particularly ignored is engaging patients in the creation of conceptual frameworks that define outcomes that matter to patients. Clinicians and researchers generally create these frameworks, relying on the incorporation of the patient voice through one-on-one interviews, surveys, and focus groups. However, each of these strategies are fraught with limitations, including patient response bias and potential limitations of generalizability. In addition, they do not leverage the potential of social research networks and group-based technological solutions to develop patient-centered conceptual frameworks. This presentation addresses the following objectives in PROM and PRO-PM development: (1) review of group concept mapping (GCM; Concept Systems®) as a viable method for engaging patients, (2) provision of examples of GCM applications in defining outcomes, and (3) discussion of strengths and limitations of this approach. GCM combines qualitative (statement generation and sorting) and quantitative (multidimensional scaling and cluster analysis) methods to generate visual maps depicting a conceptual model. This presentation will show examples of studies that have utilized GCM for the development of PROMs and a recent Robert Wood Johnson Foundation PRO-PM study to define patient perceptions of “good” healthcare. Strengths of GCM include evidence of validity and reliability, ability to incorporate multiple stakeholder views into a single conceptual framework, and the potential for application to measurement and evaluation. Potential limitations include problems with technical literacy, attrition, and managing response burden. Methods to address these limitations will be discussed. Overall, GCM represents a valuable participatory concept development strategy with the potential to enhance traditional researcher-driven methods in PROM and PRO-PM development.