Patient-Driven Content Creation: Effectively Introducing Wiki Repositories to Virtual Support Communities

Medicine 2.0

Background: Virtual patient communities are an important source of information and social support for many patients (e.g., [1]). Most patient communities use a threaded conversation design such as an email list or discussion forum. This simple design supports highly personalized and empathetic communication [2-3]. In addition, many communities augment their conversations with community repositories (e.g., websites, FAQs) that distill their conversations, help newcomers find their bearings, and promote their community. Wiki platforms provide a new way of creating these community repositories collaboratively [4]. However, because wikis are new to most patient communities it is not clear how to effectively introduce and use them. Objective: To identify challenges of collaborative authoring by a patient support group and effective strategies for overcoming those challenges. Methods: We performed an action research field study of 3 existing online patient groups. We provided each group with a customized wiki and suggestions on how to effectively use it. Suggestions were based on a prior study of a successful technical support community and tailored to the medical context [4]. Data from discussion archives, wiki page histories, and server logs were used to analyze participation patterns and wiki growth. Data from interviews and conversations between community members and the investigators were analyzed using a grounded theory approach, where common themes were identified and contrasted. The evaluation focused on both technical and social issues, similar to other studies implementing novel technologies (e.g., [5]) Results: The three groups varied significantly in the number of contributors and amount of content they created using the wikis, ranging from 1 contributor and a handful of pages (Pain Management) to a dozen contributors and 26 pages (Graves' Disease) to over 70 registered users and over 400 pages (GIST Cancer). Interviews and content analysis identified several challenges in introducing and sustaining the wiki repository. Social challenges included motivating contributions to the wiki, getting community buy-in, the hesitancy of members to edit other members contributions (even when those edits would be beneficial), and reconciling different frameworks for organizing the content. Several strategies helped overcome some of these challenges including: creating a Wiki Team that shared ownership of the wiki and having them seed the wiki with content before introducing it to the community; emphasizing the differences between a wiki and threaded conversation and how they can strengthen each other; and establishing realistic expectations about the temporal pace of activity on the wiki as compared to the discussion forum (i.e., intermittent and bursty wiki participation versus frequent and steady discussions). The most significant technical challenge was learning wiki editing syntax. Although none of the participants had prior wiki editing experience, they all learned to use the wiki with little coaching from the research team. Conclusions: The social challenges of implementing a wiki repository were far greater than the technical challenges, despite contributors' general lack of technical expertise. Further research should validate the successful strategies for overcoming these challenges that were identified in this study and develop novel social and technical strategies for creating patient-driven wiki repositories. References: [1] Meier A, Lyons EJ, Frydman G, Forlenza M, Rimer BK. How cancer survivors provide support on cancer-related Internet mailing lists. J Med Internet Res 2007;9(2):e12. http://www.jmir.org/2007/2/e12/ [2] Galegher J, Sproull L, Kiesler S. Legitimacy, authority, and community in electronic support groups. Written Communication 1998;(15): 493-530. [3] Maloney-Krichmar D, Preece J. A multilevel analysis of sociability, usability, and community dynamics in an online health...