Elvira Den Breejen*, Department of Obstetrics and Gynecology, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands José Van Der Schoor-knijnenburg, Dutch patient association ‘Freya’, Wijchen, Netherlands Willianne Nelen, Department of Obstetrics and Gynecology, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands Rosella Hermens, IQ Healthcare, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands Jan Kremer, Department of Obstetrics and Gynecology, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands Track: Research Presentation Topic: Web 2.0 approaches for clinical practice, clinical research, quality monitoring Presentation Type: Oral presentation Submission Type: Panel Presentation Building: MECC Room: Auditorium 2 Date: 2010-11-29 01:30 PM – 02:30 PM Last modified: 2010-09-21

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Background: Web 2.0 emerges as a resource to empower patients in quality improvement goals. As clinical guidelines aim to support professionals in the delivery of evidence based and ‘patient centered care’, patients’ perspectives are needed. Nowadays, there is an upcoming tendency toward active patient involvement in clinical guideline development. However, it still seems to be difficult to apply. Clinical doctors and guideline developers see more disadvantages than advantages ( e.g. costs, educational problems). Furthermore, a superior method is lacking. Web 2.0 offers us a major opportunity to overcome these issues and can get non organized groups involved in a complex process like this. Therefore we choose for a WIKI tool to collaborate patients in creating guideline recommendations.
Objective: Aim of this study is to investigate whether a WIKI tool is feasible as a new method for active patient participation in the development of a Dutch multidisciplinary guideline on infertility.
Methods: During the guideline development process, we simultaneously added an innovative wiki- based method for active patient participation. During 7 months content changes could be made on ‘WIKIfreya’ (www.freya.nl/web_wiki). After moderating and categorizing, patients’ recommendations were placed on ‘WIKIfreya’ to be prioritized. All selected recommendations were directly incorporated in our multidisciplinary guideline. Furthermore, we performed three consecutive evaluation methods to aggregate a list of abbreviations for improvement (an online evaluation questionnaire, and two expert meetings ).
Results: A total of 265 unique recommendations were made by the patients and these were moderated in 289 recommendations. Overall 36.473 pages were viewed and 298 unique visitors could be identified. Of all visitors, 81 left background information. The vast majority were highly educated women (67 %) and they were dispersed by all districts in the Netherlands. In total, 80 patients prioritized a final set of 23 recommendations. Furthermore, 45 visitors completed an online evaluation questionnaire. Possible bottlenecks were identified within the usability of this method for patient participation and the layout of WIKIFreya. The strengths of WIKIFreya lye within privacy, profits and some points of usability. Missing chances are within information provision relating to treatment options and causal factors of subfertility. Moreover, instructions for use, goal of the project and marketing related aspects are missing. In addition experts identified bottlenecks in lack of structure in the formulation of recommendations and the prioritization system. However, patients are positive: 98 % would recommend this website to others and 84 % would participate in such a project again.
Conclusions: To the best of our knowledge, this is the first study that uses a WIKI- tool to ensure active patient participation in clinical guideline development. While WIKIFreya is a promising tool to ensure patient participation in clinical guideline development, a few challenges to improve this method are to be adopted. Further research to improve this website in a patient centered design methodology is strongly recommended.