Page 71 - Shared Guideline Development Experiences in Fertility Care

Introduction
Having patients participate in clinical practice guideline (CPG) development is essential but challenging [1,2]. eir participation is particularly assumed to result in higher-quality guidelines in terms of applicability, acceptability, usefulness, and enhancement of implementation [1-7]. For instance, patient participation is one of the key criteria of the Appraisal of Guidelines Research and Evaluation (AGREE) instrument [8], which is used to assess the methodological quality of guidelines. However, only 25%–50% of CPG developers regularly involve patients [9].
Several practical limitations could explain why patient participation is not common
practice in CPG development. First, various methods for patient participation in
CPG development can be used, such as conducting in-depth interviews or focus
group meetings to explore patients’ preferences, asking patients’ representatives to
comment on dra s of the CPG, or including patients’ representatives or patients 4 in the CPG development group [3, 6, 10-14]. However, practical guidance on how
and when to apply these methods is lacking [15]. Second, all methods are restricted to including a selected number of patients or patients’ representatives and do not involve a large population of patients. ird, transparently integrating patients’ preferences into CPG recommendations is di cult and o en unclear [16]. Fourth, organizational (e.g., recruitment of participants), nancial (e.g., costs of patients’ education or for conducting focus groups), and sociopolitical barriers (e.g., CPG developers’ resistance to including patients in the CPG group) may impede patient participation in CPG development [13]. Finally, studies on the e ectiveness and impact of patient participation are limited [15].
A new methodology for patient participation in CPG development that enables overcoming most of these drawbacks is thus necessary.
Web 2.0 tools o er opportunities to let nonorganized groups participate in a complex process such as CPG development [17-20]. In particular, a wiki, such as Wikipedia, seems to be an easily accessed tool, which enables patients to collaborate in formulating guideline recommendations directly. Ideally, to test the feasibility of such a new method for patient participation in CPG development, an Internet- using young target group such as infertile patients [21-23] is preferred. Infertility is commonly de ned as “any form of reduced fertility with prolonged time of unwanted non-conception” [24] and a ects approximately 80 million couples worldwide [25, 26]. In this study, we applied wiki technology as a participatory
Wiki for patient participation
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