Jackie Bender*, Centre for Global eHealth Innovation, University of Toronto and University Health Network, Toronto, Canada Carolina Jimenez-marroquin, Centre for Global eHealth Innovation, University of Toronto and University Health Network, Toronto, Canada Alejandro (alex) R. Jadad, Centre for Global eHealth Innovation, University of Toronto and University Health Network, Toronto, Canada Track: Research Presentation Topic: Building virtual communities and social networking applications for patients and consumers Presentation Type: Oral presentation Submission Type: Single Presentation Building: MECC Room: 0.9 Athens Date: 2010-11-30 01:00 PM – 02:30 PM Last modified: 2010-09-21

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Background: An increasing majority of individuals are seeking the "just-in-time someone like me" in online communities to aid in their health decision-making. Most research on online communities has focused on characterizing the use of one or a few communities using a single medium such as bulletin boards. Little attention has focused on characterizing the range of online communities on a particular topic.

Objective: The purpose of this study was to describe the scope and characteristics of English language online communities for breast cancer survivors.

Methods: In December 2009 we conducted a systematic search of the Internet to identify English language online communities for breast cancer survivors. We used three search strategies: 1) a Google search string of computer-mediated communication (CMC) terms combined with the keyword ‘breast cancer’, 2) individual Google queries of three to five words that reflected a particular type of online community (e.g. breast cancer discussion forum), and 3) a review of the resource lists of identified websites. We restricted our analysis to websites for breast cancer survivors that included at least one form of active CMC and content in English. Personal websites and blogs were excluded. Two of us independently extracted information on the specialization, affiliation, CMC, moderation, size, user-generated content and launch date. Website administrators were contacted for information when necessary.

Results: In total, we identified 122 websites, 10 of which contained more than one distinct breast cancer community (e.g. Facebook contained over 600). Not one search strategy produced the entire set. The majority of sites (72%) were American created by either a non-profit group (47%) or commercial entity (46%). Only 7% of sites were associated with a university or health care institution, while at least 38% were initiated by a breast cancer survivor or affected loved one. Most websites (n=81) had a broad focus (e.g. health, cancer or general purpose), one third (n=41) were exclusive to people affected by breast cancer and 16% were tailored to a specific type or demographic of breast cancer survivor. The majority of sites (92%) contained message boards as their main community communication tool and 44% were social network sites. Most communities (63%) were moderated by website staff or community members, only three were moderated exclusively by health professionals. Less than half of the sites (42%) linked to each other. Analysis of website use statistics is in process.

Conclusions: There are a wide variety of breast cancer support communities on the Internet, many of which have been created by breast cancer survivors out of necessity. The scope of peer support options on the Internet will inevitably increase due to the growing popularity of social media applications that provide ordinary people with the tools to create the support resources that they need, when they need them. Future research efforts may be best directed toward collaborating with patients to identify gaps in online peer support and develop strategies to efficiently navigate and assess the rapidly growing supply of supportive care online.