Background: Patient participation is essential in developing high-quality guidelines but faces practical challenges. Evidence on timing, methods, evaluations, and outcomes of methodologies for patient participation in guideline development is lacking.
Objective: To assess the feasibility of a wiki as a participatory tool for patients in the development of a guideline on infertility determined by (1) use of the wiki (number of page views and visitors), (2) benefits of the wiki (ie, number, content, and eligibility of the recommendations to be integrated into the guideline), and (3) patients' facilitators of and barriers to adoption, and the potential challenges to be overcome in improving this wiki.
Methods: To obtain initial content for the wiki, we conducted in-depth interviews (n = 12) with infertile patients. Transcripts from the interviews were translated into 90 draft recommendations. These were presented on a wiki. Over 7 months, infertile patients were invited through advertisements or mailings to formulate new or modify existing recommendations. After modifying the recommendations, we asked patients to select their top 5 or top 3 recommendations for each of 5 sections on fertility care. Finally, the guideline development group assessed the eligibility of the final set of recommendations within the scope of the guideline. We used a multimethod evaluation strategy to assess the feasibility of the wiki as a participatory tool for patients in guideline development.
Results: The wiki attracted 298 unique visitors, yielding 289 recommendations. We assessed the 21 recommendations ranked as the top 5 or top 3 for their eligibility for being integrated into the clinical practice guideline. The evaluation identified some challenges needed to be met to improve the wiki tool, concerning its ease of use, website content and layout, and characteristics of the wiki tool.
Conclusions: The wiki is a promising and feasible participatory tool for patients in guideline development. A modified version of this tool including new modalities (eg, automatically limiting the number and length of recommendations, using a fixed format for recommendations, including a motivation page, and adding a continuous prioritization system) should be developed and evaluated in a patient-centered design.