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Overberg, R., Otten, W., de Man, A., Toussaint, P., Westenbrink, J., & Zwetslock-Schonk, B. (2010). How breast cancer patients want to search for and retrieve information from stories of other patients on the internet: an online randomized controlled experiment. J Med Internet Res. 12(1). Retrieved April 5, 2011 from: www.jmir.org/2010/1/e7/
This study sought to demonstrate that having multiple search facilities on a website supplying personal patient stories written by women diagnosed with breast cancer would serve to increase reports of satisfaction with the stories displayed from women diagnosed with breast cancer looking for personal stories to supplement feelings of support. A questionnaire was completed by 182 women diagnosed with breast cancer following participation in searching 170 coded stories on a website. Contrary to the investigators' expectations, the participants indicated the greatest improvement in satisfaction and impact of the displayed stories when searching by story topic, as opposed to story topic and author profile or author profile alone.
Including search functionality therefore enables women seeking support from personal stories posted online to find stories that are more relevant and have a more significant impact on their coping with their diagnosis. In designing, developing, or assessing an online support group's functionality it would therefore be highly recommended, based on this study, to include a search criteria based on the story topics. Given the difficulty of individually coding topics, however, the investigators suggest a tagging method whereby authors tag their stories with search terms, or including a search engine service that provides full-index or clustering search functionality.
Keller-Olaman, S. (2008). Breast cancer information and support preferences to guide service development. Ontario Breast Cancer Information Exchange Partnership. Retrieved April 5, 2011 from: www.obcep.ca/files/HUBFINALMay1408.pdf
This report provides an overview of the development of a cancer support website funded by the Ontario Breast Cancer Information Exchange Partnership. It sought to develop an innovative website to provide information and also to pilot online, peer-led support groups for women with breast cancer by sourcing opinions and suggestions from 150 participants, some of whom were medical professionals. The article provides a detailed explanation of the sorts of expectations the site was intended to meet, as well as listing technical aspects of the site itself. Various types of peer-led support groups were piloted, including tele-support and chat-room-based online groups. Technical issues and suggestions for software for chat programs are included in the report.
Comments from the participants and the facilitators are listed, and recommendations for future site development are detailed. The report provides exceptional detail from their surveys of the participants which are also aggregated to provide useful summaries of feelings of satisfaction and usefulness of various aspects of both the content and delivery. This report is particularly useful as a guide to meta-level technical design and development considerations necessary in the creation of online support groups, and includes comments on attendance, participation, and ease of use. Unlike the majority of literature in this area, this report provides insights from the peer-based facilitators: a crucial component of successful online support groups. Overall this report details mistakes to be avoided and recommendations for future sites and support groups which are both insightful and well-documented, and reference to this document would provide significant technical and practical guidance to the development of an online breast cancer support group.
Williamson, K., & Manaszewicz, R. (2002). Breast cancer information needs and seeking: towards an intelligent, user sensitive portal to breast cancer knowledge online. New Review of Information Behaviour Research. Retrieved April 5, 2011 from: www.sims.monash.edu.au/research/eirg/assets/isic.pdf
The study sought to outline recommendations for the development of a targeted web portal which addressed the specific user needs determined by a review of current literature on the subject and in-depth interviews with a selected group of women diagnosed with breast cancer who were intended to represent as wide a range of potential users as possible. The article cites the overwhelming amount of irrelevant, non-targeted or generic data, and and the inefficiency of search engines as significant barriers to satisfactory access to needed information online, and indicated the need for women to find other women in similar age ranges, disease stages, and psychological space as themselves. It also rejected the commonly-adopted frameworks into which patients' information needs are typically placed, demonstrating through numerous quotes from the participants that information needs are highly complex and reductionist frameworks fail to address the needs of any of the participants. The study states its intention to develop an 'intelligent portal' through which individuals can access information according to their needs and contexts.
While the article indicates the state of current information provision online and outlines the issues with the methodology used to frame attempts to provide this information, it does not provide in-depth recommendations for provisions of information other than to say that it needs to be sensitive to multiple users coming from different contexts with differing information wants and needs. Proposed follow-up studies done by the same investigators, however, should detail solutions to these issues. The article does provide a broad range of needs and wants with accompanying quotes from their participants.
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Helft, P.R. (2004). Breast cancer in the information age: A review of recent developments. Breast disease, 21(1), 41-46. Retrieved April 5, 2011 from: http://iospress.metapress.com/content/v867224v16562v47/
While Helft (2004) does not specifically address online support groups, he does provide a comprehensive overview of the literature on breast cancer and Internet information. The article supplies readers with a concise literature review on the ways in which breast cancer patients utilize the Internet to obtain information about their illness. Results indicate that online support groups are only one of the ways patients search for health information online. Helft (2004) also addresses issues surrounding incorrect health information online and the problems this can cause with oncologists. This article contextualizes the information-seeking behaviour of breast cancer patients in an online-age and provides a starting point for further investigation.
