Mutual Help Medical Websites

in
Pattern number within this pattern set: 
54
Links: 

Big-Picture Health Information, Service-Learning, Shared Vision, Self-Help Groups

Andy Dearden
Sheffield Hallam University
Patricia Radin
Formerly, California State University-Hayward
Problem: 

People suffering from chronic medical conditions need both information about their condition and the support of others who share their problems. How can such groups of people use the Internet to address their needs, and how can they design and operate a website for the best possible outcome?

Context: 

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

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.

Solution: 

Seek to build trust in stages:

1. Attract and reassure new visitors by giving visual messages explaining why the website was built and who for. Avoid advertising and show sponsorship from individuals clearly. Provide messages from others who share the condition.

2. Allow users to choose when and how to give out personal information. Separate publicly available profiles, from password protected areas where more personal information might be shared. Chat rooms can allow a more ephemeral form of "conversation". Sites should also permit people to send personal responses to posted comments, instead of posting to the whole forum.

3. Be alert to the potential problems of lurkers or abusive material. Active editors are needed to edit out abusive material, to act as hosts in chat rooms, and to maintain the site as a safe space.

4. Seek to build "thick trust," by supporting joint activities - doing things together, this gives people the opportunity to size up each other in a variety of situations.

Verbiage for pattern card: 

People suffering from chronic medical conditions need information and the support of others who share their problems. A web community can be a powerful source of collective intelligence, of comfort, wisdom, friendships and material assistance. Trust must built in stages through communication, privacy, and planning. Moreover, the organizers and the community itself should work together to build "thick trust" through collaborative activities.

Pattern status: 
Released