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Discussion

The findings of this study suggested that while some users may be passive in the community others may be quite active.  There were three drivers that brought individuals to participate in the online forum studied: self-management, trust, and support (Figure 3). As the basis of this forum is to provide support, it is not surprising that support and trust are two reasons for participation. Desire to seek self-management support and technical knowledge from other users is particularly interesting, since the users did not seem to know each other in person. This finding suggested that there is a value placed on the experience of laypeople. Mistrust in the word or actions of the physician arose as a significant driver for becoming an information seeker, further bolstered by the idea that the layperson is valued by those in this community. A plausible explanation for this observation could be that information seekers considered information providers as neutral parties without any ulterior motives.

Future studies may wish to examine trust, self-management, and support as outcome variables among information seekers and information providers, as moderated by their relationship with this disease. Future studies could also verify the results of this study by analyzing data from other online sources. Triangulation31 based on findings from other studies can help to generalize the results and findings of this study. Other studies may determine the influence of introducing a professional into an online support community. Additionally, further studies could employ quantitative methods to increase the validity of the findings in this study. These studies could quantify the role of information technology in building more cohesive communities. Long-term qualitative work could determine the transformational process of a poster as the poster moves from being an information seeker to being an information provider.

Conclusion

As the findings of this study suggest, the online ovarian cancer community forum was a place to seek and provide technical and emotional support, education, and experience. While information seekers often came to the forum as passive users, there was a core handful of active information providers who commonly participated and shared their knowledge and experience. Information seekers looked for answers regarding self-management, trust, and emotional support. The information providers were commonly looking for something as well: an opportunity to be part of a community, provide empathy, and search for catharsis.

Acknowledgments

We would like to acknowledge MedHelp International for providing access to the data associated with the ovarian cancer online discussion forum. We would like to especially thank Ms Cindy Thompson, cofounder and vice president of MedHelp International for her support. Also, we greatly appreciate the invaluable advice of Dr John Dugger and Dr Joan Cowdery of Eastern Michigan University.

Disclosure

The authors have produced this paper as impartial and non- biased investigators. There is no conflict of interest on behalf of either author of this paper.

Published October 23, 2012.

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