Mutual-Help Medical Websites

Pattern number within this pattern set: 
Patricia Radin
California State University-Hayward

The Internet allows us to become content providers as well as users, thus breaking down the monopoly that doctors once held on medical information. Potentially, a medically based Web community can become a powerful source of collective intelligence about a particular medical condition, with thousands of people gathering research results, articles, and personal observations to share with each other. Such a community also can be a source of comfort, wisdom, and even new friendships and material assistance. However, the nature of the medium also allows for casual, even abusive use of the information space. How can a site be designed and operated for the best possible outcome?


The three-year participatory research on which this pattern was based took place in cooperation with Breast Cancer Action Nova Scotia, . It is applicable to adult communities dealing with a long-term, serious disease or condition such as cancers, diabetes, organ transplant, multiple sclerosis, or chronic depression. However, the study results may well also be applicable to other purposes as well, including social activism.


To approach this problem, I 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 in-person networks in bounded situations, it appears applicable to any context where mutual assistance is being rendered, such as an online medical mutual-help group.

Through a three-year participatory study, I analyzed , Breast Cancer Action Nova Scotia's interactive site. My data were derived from content analysis, server log data, interviews, and in-person observation in the U.S. and Canada. I chose Breast Cancer Action Nova Scotia's website as an exemplary case to study because it is a powerful engine of social capital. BCANS, as it is known among the "regulars," 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 today serves 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 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 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. There are two sub-forums now, one to accommodate groups planning get-togethers and one to allow for the swapping of recipes, jokes, and so on. A chat room is open 24 hours a day; regular chats scheduled Wednesday evenings, Saturday and Sunday afternoons. A "prayer chain" section is available for users to post spiritual messages. 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.

It became apparent in this study that specific features of site design and operations helped to move visitors progressively toward a state of greater trust and reciprocity. These features allowed new visitors to size up the costs/benefits of participation in a risk-free environment; it allowed longer-term users to stage their level of self-disclosure; choose from many ways to contribute and receive from the group; and take part in various shared experiences, both virtual and face-to-face; and it gave the more established community members chances to develop personal relationships and initiate projects of mutual benefit..


This study concludes that BCANS built trust in three stages. (Note: I am referring to this process in the past tense based on my study data, but nothing appears to have changed at the date of this submission, so the narrative could just as well be in the present tense.)

1. In most cases, new visitors were attracted and reassured by visual messages saying this was a site built for them. Users cited the absence of advertising, clearly shown sponsorship by breast cancer survivors, and the opportunity to read caring messages from others with breast cancer as signs that they were in a special, trustworthy place -- a sanctuary.

2. Self-disclosure, a key step in building mutual trust, was promoted by giving users an opportunity to choose when and how to give out personal information. In the password-protected "biog" section, they could tell their cancer story and pour out their hearts. In a public "profile" they could give a quick sketch of themselves if desired. Chats allow a more ephemeral form of "conversation" while pop-out email forms permit people to send personal responses to posted comments, instead of posting to the whole forum. Notable in this self-disclosure stage are disclosures about poor medical treatment, alternative and complementary treatments, environmental carcinogens, and other issues that go against mainstream thinking but are received supportively in this community.

3. Building "thick trust," according to interpersonal relationship theory, usually depends on doing things together, giving people the opportunity to size up the other in a variety of situations. Most notably, this is accomplished by the webmistress's commitment to responding to user needs by building new site features such as the chat room. Sometimes the participants themselves use the site for virtual shared experiences such as written descriptions of "bus rides" to visit sick members anywhere in the world and bring them wondrous imaginary gifts. The get-togethers section helps promote face-to-face meetings anywhere in the world, and these are sometimes attended by the webmistress herself.

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