Page 103 - Shared Guideline Development Experiences in Fertility Care

Online tool for patient partnership in guidelines
recommendations for uptake in the guidelines. Facilitating the formulation of
these recommendations by patients using a standardized format as well as creating
the ability to continuously prioritize recommendations introducing a star-rating
system were other important improvement goals. e initial prototype of the
specialized online participatory tool was pilot tested and re-designed by two expert
panels including the two types of end-users of the tool: one patients’ panel (n=8)
and one clinical guideline developers’ panel (n=6), including one web designer.
e tool was successively re-designed through the input of both panels through
three steps: 1) redesign of the homepage and registration page; 2) redesign of the recommendations pages, including the prioritization of recommendations; and 3)
nal assessment of the re-designed tool. In each round, both types of end-users
provided their suggestions for improvement as a whole by completing a written questionnaire regarding their perceived advantages and disadvantages as well as
their suggestions for improvement. is questionnaire was based on the relevant
items of the framework of Yusof and colleagues for the evaluation of e-health
initiatives [26]. Items included: ease of use of the tool, layout of the tool’s website,
value of the participatory tool for CPG development, content of the tool’s website,
and experienced privacy on the tools’ website. Additionally, the rst and the
last step included an assessment of the usability of the tool by using the System 5 Usability Scale (SUS) questionnaire [27].
Description of the specialized online participatory tool
e nal version of the specialized online participatory tool was fully based on open-source so ware and made accessible over 12 months at www.freyawiki.nl. e homepage included a description of the tools’ goals and a navigation menu for linking to ve main pages: the recommendations page, the discussion page, the chat page, the frequently asked questions page, and the registration page (Figure 1). On the recommendations page, visitors could de ne or modify recommendations according to the statements of the GuideLine Implementability Appraisal (GLIA) instrument [28]. To help patients formulate clear recommendations as supported by this instrument, a template was used to address the following questions: (1) under what circumstances?, (2) has who?, (3) with what level of obligation?, (4) to do what?, (5) to whom?, and (6) how? Controlled natural language was applied to create and populate a template for recommendations (Figure 2). e question ‘why’ was posed on a linked, but separate, motivation page to enable patients to express their motivation for their recommendation. By using the template,
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