Page 100 - Shared Guideline Development Experiences in Fertility Care

Chapter 5
Abstract
Background: Participation of patients in guideline development is advocated, but transparent approaches to facilitate this have hardly been practiced. A collaborative writing tool such as a wiki is promising for such participation, but needs customization.
Objective: To evaluate the use and bene ts of a specialized online participatory tool to facilitate patient partnership in guideline development.
Methods: A specialized online participatory tool was developed based on (dis) advantages that resulted from a previous pilot study of a wiki tool. We used a mixed method to evaluate its use and bene ts. Outcome measurements for use included: actual use of the tool (number of unique visitors, registered participants, and visits), the usability of the tool measured on a SUS-scale (0–100), and representativeness of visitors compared to a valid representative Dutch hospital cohort. Outcome measurements for bene ts on guideline development included: number of newly generated and modi ed recommendations, number of prioritizations, and the change over time of the top ve recommendations.
Results: In 12 months, the tool welcomed 3028 unique visitors, of which 87 were registered participants. e tool enabled a broad and representative (age (P=0.39), type of infertility (P=0.31), and percentage of childlessness (p=0.71)) female target group (n=75) compared to a hospital group (n=200) to participate. Participants delivered a set of 50 clear and prioritized recommendations for clinical guidelines on Dutch fertility care. Overall, 39 out of 45 registered participants for the evaluation quali ed the tool as highly usable (median SUS-score=82.5). Conclusions: Using this specialized online participatory tool is a feasible method of involving a broad group of representative infertile patients in guideline development. is paper can be used as a practical guide for policymakers, guideline developers, and patients’ organizations that are willing to facilitate patient partnership in guideline development in any healthcare setting.
Key words: patient-partnership, patient-centredness, wiki, guideline development, infertility, E-Health.
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