Discussion:
Breast Cancer Action Nova Scotia's (BCANS http://www.bca.ns.ca) interactive site is the world's largest and oldest breast cancer discussion site, indeed one of the oldest medical mutual-help sites in existence, dating from 1996 when it was started by a volunteer. The site began a period of fast growth in 1998 and in 2002 was reported to have about 400 closely involved "regulars", a wider circle of people who drop in now and then, and an unknown number of lurkers, some of them long-term. Not only women but a few men with breast cancer post to this group, as well as husbands, sisters, brothers, mothers, fathers, and friends. Although the majority of users are American, with about one-fourth Canadian, the site also hosts visitors from all the other continents, notably a large and active contingent from Australia and New Zealand, numerous Europeans, and participants from Turkey, South Africa, India, Hong Kong, and elsewhere.
Participants in the website can give and receive:
• reassurance and caring;
• informal advice to cope with the myriad sub-acute problems that arise;
• encouragement to stick with medical treatment regimens;
• professional medical information, such as details of new clinical trials;
• support for questioning conventional medical wisdom;
• material goods such as cards, gifts, and funds.
The site also includes tributes to those who have died; a collection of links to specific breast cancer topics; and a glossary of more than 400 breast cancer-related terms.
Since its launch with a single discussion forum, an interactive calendar for local (Halifax, Nova Scotia) activities, and a mission statement, BCANS has grown into a community that has written books, given conference presentations, appeared on TV and radio, launched a fundraising arm, and formed numerous in-person friendships.
To account for the success of BCANS, Patricia Radin turned to social capital theory, which analyzes the elements of beneficial social networks. According to the literature, trust is at the heart of a "virtuous circle" of activity wherein people voluntarily help each other, receive benefits in return, and again reach out to provide assistance. Although social capital theory was developed by looking at networks of people working face-to-face in bounded situations, it appears applicable to any context where mutual assistance is being rendered, such as an online medical mutual-help group.
Some specific features of site design and operations help to move visitors progressively toward a state of greater trust and reciprocity.
• An alert webmistress fiercely protects the community from hurtful messages, spam, and exploitation, thus promoting a high level of trust and goodwill.
• As well as the main forum discussing breast cancer issues, there are now additional sub-forums: e.g. one to accommodate groups planning get-togethers and one to allow for the swapping of recipes, jokes, and so on.
• A "prayer chain" section is available for users to post spiritual messages.
• Chat rooms are open 24 hours a day, but particular times are specified when a ‘host’ will be available to welcome newcomers to the chat room.
• There are two ways for participants to post permanent self-introductions (including photos): by filing a profile, which is then automatically linked with each message; and by posting an autobiography in a password-protected section accessible only to others who have filed a "biog." Many personal friendships have been formed and some community members visit the discussions as often as three times a day.
These features allow new visitors to size up the costs/benefits of participation in a risk-free environment; it allows longer-term users to stage their level of self-disclosure; choose from many ways to contribute and receive from the group; and to take part in shared experiences, both virtual and face-to-face; and it gives the more established community members chances to develop personal relationships and initiate projects of mutual benefit.
This pattern is in memory of Patricia Radin who is the original author.