Health Economists on Involving Patients in Modeling: Potential Benefits, Harms, and Variables of Interest

Background Patient involvement in health economics modeling has been advocated on numerous grounds, including as a way to better manage social and ethical value judgments in the modeling process. However, some have pointed to potential risks and variables that could influence the overall benefit of involvement. To inform future research, there is a need to generate knowledge on potential benefits, harms, and variables relevant to patient involvement in health economics modeling. Methods This analysis used data from a qualitative study in which 22 health economists were asked their views on the possibility of involving patients in the modeling process. Using qualitative methods, the authors organized participants' responses into theory-driven categories (“potential benefits”, “potential harms”, “variables of interest”) and identified data-driven themes and subthemes within those categories. Results Findings point to potential benefits and harms to the model, modeler, patient, and modeling process. Variables of interest relevant to future research included patients' specific roles, modeler and patient characteristics, the goals of modeling, dynamics among participators, and features of high-level procedures. The findings raise a number of specific questions that may be fruitful to explore in future research on patient involvement in health economics modeling.