Developing an Online Support Community for Breast Cancer

Canberra.
The first paper session at the Digital Humanities Australasia conference starts with a paper presented by Cynthia Witney, and deals with the differences between social networks and online communities. This is part of an ARC Linkage project which develops guidelines for an online community for breast cancer survivors, also sponsored by the Steel Blue boot company’s ‘purple boots’ philanthropic campaign.

Part of the aim here was also to move the campaign into a Web 2.0 space by developing a ‘purple boot brigade’ social network site; an early version of this network (based on Ning) attracted some 880 supporters. This early attempt at social networking successfully managed to spread awareness about the campaign and its cause; the site became a method for interactive social education.

But the broader aims of the project are also to develop a stronger sense of community around bread cancer awareness, and amongst breast cancer survivors. The social network itself did not yet have a strong sense of community; it was useful for message dissemination, but not yet for the development of significant relationships in a real community as such.

All of this also took place against the background of the significant rise of social media platforms such as Facebook and Twitter over the past few years, of course. What the project was most interested in pursuing were meaningful online communities connecting people with shared interests and needs, who were able to support one another. This is also problematic in a health context, of course, as some of the issues being discussed require the involvement of trained health professionals.

A first site built to pursue these goals was Breast Cancer Click, opened first without professional facilitators to develop a sense of community amongst regular participants, with health professionals introduced later to investigate how this would affect and change the dynamics of the community. During this first stage, there was little which differentiated this site from other online breast cancer communities in Australia; the community struggled to establish a strong sense of interaction, in fact. Once a qualified breast care nurse came online, on the other hand, activities and interaction grew substantially (there are now weekly group chatrooms hosted on the site, for example).

Key remaining challenges include the presence of members with high needs (including hypochondriacs), who are highly active and demanding in their interactions; the setting of boundaries for what the site can and cannot provide; and the evaluation of how truthful the contributions of individual users are. There is a need to do further work towards clear guidelines, and a continuing exploration of relevant technologies for online community interaction.