Wikis as an Opportunity to Improve Patient Participation in Developing Information Leaflets: A demonstration project in infertility patients.

Tom H Van De Belt* Tom H Van De Belt*, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands
Marjan J Faber, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands
José Knijnenburg, Freya, Patients’ Association for infertility, Wijchen, Netherlands
Willianne Ldm Nelen, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands
Jan Am Kremer, Radboud University Nijmegen Medical Centre, Nijmegen, Netherlands

Track: Research
Presentation Topic: Wikis
Presentation Type: Poster presentation
Submission Type: Single Presentation

Building: LKSC Conference Center Stanford
Room: Lower Lobby
Date: 2011-09-17 12:30 PM – 01:30 PM
Last modified: 2011-08-12

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In the process of developing patient information, the participation of end-users, is often rare. Usually, healthcare professionals alone create the information with little to no patient input. This is a missed opportunity, as they have gained a wealth of experience based on the knowledge of their disease. Clinicians are also seldom trained in estimating patients’ information needs and describing them in layman’s terms. Thus, we hypothesized that utilizing the experience-base of patients in the development of information leaflets would address this critical shortcoming of the presently available patient information. Our objective is to explore the feasibility of using a wiki as a patient participation tool for generating a patient information leaflet.
This observational study will be the first to use wikis in the development of dynamic patient information leaflets. Fertility care was selected as the setting for this pilot because this group of patients is familiar with the Internet, they are well educated, and of a demographic age in their twenties or thirties. The target population was all Dutch fertility patients that received or have received intrauterine insemination(s) (IUI). In the Netherlands, IUI is the most common treatment in fertility care with 28,500 cycles each year provided by 100 fertility clinics. MijnZorgnet B.V., a non-profit healthcare organization that offers online platforms for patients, their relatives, and healthcare professionals provided the wiki used in this study. We developed a questionnaire and asked patients to identify relevant topics for the wiki. Subsequently, Dutch infertile patients and professionals were invited to help add or improve the IUI information. To raise awareness among patients and professionals and to persuade them to make contributions, two strategies were used (one online and one offline). After eight months, we will evaluate the process. First, by means of interviews and questionnaires, we will address users’ expectations and experiences and focus on the barriers and facilitators for participation in the wiki. Second, we will determine the accuracy, clarity and presentation format of the information distilled on the wiki by comparing the information with current fertility guidelines; as well as a usability questionnaire. Third, server data logs will be statistically analyzed.
Currently, both the wiki and the evaluation are ongoing. The preliminary results are interesting. Over 2000 people have visited the wiki but only six people have modified or added information to the wiki. During the Medicine 2.0 Congress, we will be able to present the final results of our study.
If this innovative tool appears to be successful, the ripple effect can be both important and beneficial. By using a wiki tool, patients are able to participate in the development of patient information and collaborate with a variety of health professionals (physicians, nurses, laboratory workers). Furthermore, quality improvements with regard to information provision are expected. We also hope that information leaflets will be dynamic and up to date. Finally, using a wiki in the creation of patient information leaflets may save resources, including money, health professional time, and editorial resources.

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