Page 90 - Shared Guideline Development Experiences in Fertility Care

Chapter 4
the wiki tool was not focused on patients’ experiences and was less extensive than our multifaceted approach to gaining insight into patients’ barriers to adoption of our wiki. In this study, we involved a large number of patients (298), which cannot be realized using traditional methods, such as focus groups, in which participation is generally restricted to a maximum of 8 participants [42]. We even assessed the nal selection of top recommendations for their eligibility for direct integration into the CPG. us, the patients’ contribution to the CPG was clearly illustrated by integrating their recommendations in their entirety, indicated by the new P level (Patients). We also addressed other practical limitations of the methods used to enhance patient participation in CPG development, such as organizational (e.g., recruitment of participants), nancial (e.g., travel costs), and socio-political (e.g., professional resistance to including patients in CPG development group) constraints.
Professionals and patients’ representatives could also use the wiki and had the opportunity to informed themselves about patients’ views and to bring up content for discussion in the CPG development group. According to the results of the evaluation questionnaire and the interviews, this content was also helpful to patients as an information source, which may also explain the relatively large number of page views. Although providing information was not the initial goal of this wiki, its relevance is in agreement with published literature on conventional wikis [19] and with European patients’ perception of the importance of the Internet as a source of information [43]. Hence, this unintended but solid aw concurrently yields challenges for improvement and might be aided by providing clearer instructions for use and description of the goal of the wiki, but also addresses important implications for future studies in this eld. Next to the informational value of formulated recommendations for high-quality care, attention should be paid to useful links to relevant websites that may potentially attract more patients to the wiki website and increase the chances for adoption of an improved version of the wiki.
Although drawbacks to active patient participation methods were reduced, this study drew attention to some other potential implications derived from patients’ suggestions that might improve the use of a future medical dedicated wiki for this purpose exclusively. First, structuring recommendations and limiting the number and length of recommendations to presentation on one screen may improve usability [44]. Second, using a xed format in the formulation of recommendations, based on relevant items of the GLIA instrument, may not only improve usability
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