JMIR Publications

ABSTRACT

Background:

There is a lack of robust knowledge about the best method to involve patients and population in clinical practice guidelines (CPG) development. This lack of evidence is a potential threat to the the quality of CPG in general and might have an impact on the adhesion of patients and providers to the guidelines and ultimately to the quality of care provided from them.

Objective:

The goal of this pilot trial is to document the acceptability, feasibility and effectiveness of two methods of involving patients in CPG development.

Methods:

A single-blind crossover pragmatic trial was performed with patients with traumatic brain injury (TBI). The patients experimented two alternative methods of producing clinical practice recommendations, i.e. a discussion group (control intervention) and a Wiki (experimental intervention). The participants rated the acceptability of the two methods, and feasibility was assessed using indicators such as the number of participants who completed the two methods and the number of support interventions required. Twenty experts, blinded to the method of producing the recommendations, independently rated the recommendations produced by the participants for clarity, accuracy, appropriateness and usefulness.

Results:

Twenty participants with TBI were recruited and sixteen completed the study. The acceptability of the two methods were found to be similar, despite qualitative comments indicate small preference for focus groups social characteristics. Both methods appeared highly feasible to involve patients in CPG development, and the experts’ perceived effectiveness was similar, despite the recommendation produced through focus group was deemed as more relevant to support the clinical practice.

Conclusions:

Our results confirms previous observations about the acceptability and feasibility of focus group and wiki to allow patient and population to participate in clinical practice guideline production. It adds to the scientific literature establishing the similarity in effectiveness of the two methods. Clinical Trial: Clinical trial KT Canada 87776.