I first learned about the skills required to create and nurture online support communities from an extraordinary online support group leader named Glenna Tallman, who started several pioneering online self-help groups in 1994. Glenna's Garden, the cancer support and information area on AOL's Better Health forum, is named in her honor.

Glenna had both AIDS and advanced spinal cancer and knew she had only a few months to live. Yet she used all her available energy to help the hundreds of cancer and AIDS patients who participated in her online groups. Glenna taught us all how much one dedicated person can do to turn a personal misfortune into an opportunity to help others.

Somehow, in the midst of it all, she found time to answer my e-mailed questions about the skills required to create and sustain an online support community. Here are Glenna's Guidelines for leaders of online support groups:

1. Be there for all community members, both regulars and newcomers. Check in at your forum regularly and respond to postings ASAP. Listen, welcome newcomers, listen, exchange jokes, listen, and answer questions. But most of all, LISTEN, and respond to what you hear. One individualized response is worth a hundred computer-generated messages. Newcomers especially need a great deal of attention. Let them know that in joining the community, they will find the help and support they seek-and will have an opportunity to become a valuable resource for others.



2. Share your own experiences with the focus topic-both the hard times and the success stories. Your openness and candor in speaking about your own challenges will make other community members feel more comfortable in sharing their own experiences. When this is done correctly, community members who may previously have felt stigmatized by their illness will come to consider it not only their ticket of admission to the online support community, but an important part of the treasure to be shared.



3. Introduce new community members to more experienced self-helpers who can help with their specific concerns and serve as positive role models. Being in regular contact with someone who has successfully dealt with the problem you are now facing can be immensely reassuring. Veteran self-helpers can share their experiences, teach new skills, and help the less experienced learn more about managing their condition.



4. Invite friends and family members of the designated patient to join your online community. When dealing with health professionals, the primary relationship is usually that between the doctor and the patient. Family members and friends often feel left out. Online self-help networks should offer a full measure of membership and support to friends and family members as well. Such auxiliary members often become vitally important community members, often serving as hosts, facilitators, and experts on the topic condition.



5. Encourage others to share in the leadership of the group. Some group members will exhibit a special talent for supporting others, facilitating discussions, welcoming newcomers, and providing other hosting functions. Such natural leaders should be encouraged to take on informal or formal leadership roles. In many of the most successful online groups, hosting and facilitating functions are shared among a core group of experienced regulars who provide much of the glue that holds the community together.



6. Reach out to connect with sympathetic health professionals who are experts in your topic condition. Be on the lookout for health professionals who are knowledgeable about your group's topic. Invite them to serve as guest speakers, advisors, and consultants. Ask them to answer members' questions and to review frequently-asked questions lists (FAQs) and other online resources your group produces. Make it clear that you expect them to play a consulting, not a directing role. As online self-helpers often say, in the world of online self-help, health professionals should be "on tap," not "on top." Clinicians who volunteer as consultants to self-help networks often report that they learn many useful things-both about the focus topic and about online self-helpers-which they had missed in their normal clinical experience.



7. Encourage your community to become a knowledge-and-support resource for others who share your common health concern. Effective online support communities often move beyond the needs of their current members to create and disseminate high-quality information for others concerned with the focus topic. Community members can gather, organize, and translate both technical medical information and practical one-day-at-a-time advice into the forms most useful to others faced with the same problems.



8. Be sensitive to the special vulnerabilities of your community members. Encourage and use empowering language. Community members would much rather be called "cancer survivors" than "cancer victims." Don't let anyone insult or harass community members. Use private e-mail to recommend the appropriate netiquette.



9. Be sure that your community remains egalitarian and open to all. While some members will certainly be more active than others, new members should not feel that there is a hierarchy that excludes them. If your community becomes so crowded that veteran members resent newcomers, it may be time to subdivide into two or more smaller groups.



10. Encourage community members to hold on to their power and their self-respect; to see themselves as pro-active, empowered online self-helpers, not as passive patients or victims. To participate in online self-help networks, one is not forced to take on the subservient "cloak of patienthood," and suffer the subtle indignities and loss of control that are often the ticket of admission for entering the professional healthcare system. In self-help networks, members receive advice and support from peers in a respectful, mutually-supportive atmosphere. Encourage your fellow members to adopt pro-active health behaviors, e.g., learning all they can about their condition, actively exploring diagnostic and therapeutic alternatives, communicating with others with similar conditions, getting online second opinions, monitoring their own progress, and monitoring and critiquing professional care. And when you are thanked by someone you have helped, tell them that they will have many future opportunities to pay you back--by helping someone else.

Published in The Ferguson Report, Number 4, June 1999

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