Experts who develop social programs call this the needs assessment stage. Consult with experts in the field, people who share your concerns, and representatives of relevant advocacy organizations. Find out what they know of other HeCs that address the same problem. Get feedback from them about whether or not they think there is a need for this new list. Search the Web to see how many other HeCs already exist to address this problem. If your group is for a specific disease or health condition, try Googling the name of online support groups for [disease/problem type].

Examples of Support Listservs and Web Forums

• www.groups.yahoo.com [1]

• www.groups.google.com [2]

• www.healthyplace.com [3]

• www.selfhelpgroups.org [4]

• www.ivillage.com [5]

• www.acor.org [6]

• www.samaritans.org.uk [7]

• CataList: the official catalog of publicly accessible Listserv mailing lists [8]

If you discover other groups on the same topic, contact their listowners to find out how long they have been in existence and how active they are. Groups that have been around for several years and have active discussions going on are likely to be well run and are meeting members’ needs. If you discover an HeC that is small, it doesn’t necessarily mean that it is not doing well. It may have few members because it is newly formed or the problem it addresses is very rare. Alternatively, a group that has been in existence for awhile may be small because failed to attract members or there were problems in the community that caused members to abandon it.

If you can find other active HeCs whose purposes are similar to the one you want to start, contact their listowners and ask for copies of their mission statements. How do the goals of those groups compare to what you want to do? Would your HeC be different and serve members’ needs in unique ways? If you can’t find any other active HeCs, and the there is a consensus that the need is real, go ahead with the project.

When starting an HeC, keep it simple! The Internet channel you use to run your HeC should be reliable, accessible to widest range of users and easy to use. To avoid getting overloaded with the demands of HeC management, begin with only one type of Internet medium. If members want them and the HeC has the resources to design, implement and manage them, you can always add chat groups, websites, web forums, or other kinds of functionality later. `

Mailing lists are the most commonly used application for virtual group communication. They are the application of choice because most Internet users use email more than any other kind of online services (Pew Internet & American Life Project, 2004). Many HeCs use mailing list applications to host their groups because they are email based and do not require members to have access to a broadband service. Nor do mailing lists limit the number of members who can join. Unlike Usenet and IRC chat groups, mailing lists do not require members to use a different program to access messages from the group; all messages are sent to members’ email inboxes. Mailing list-based HeCs are well suited to members’ busy lives. Mailing lists do not require message senders and receivers in the group to be online at the same time. List members can read messages from and post messages to the group whenever they can access the Internet. While HeC listowners must monitor the flow of the discussions, they do not have to be online at any specific time to do it.

References

Pew Internet & American Life Project. (2004). Internet activities [9]

The cost of implementing your mailing list hosting will depend on the number of services your HeC provides its members. It doesn't have to cost much. Thousands of HeCs are run on Yahoo! Groups (including nearly 4000 cancer related lists) which offers free list hosting services [10]. Google recently implemented its own free group hosting service mailing lists and usenet groups [11]. Google technology allows members to customize group formats, integrate web pages and implement knowledge bases to capture information of particular interest.

ACOR uses ListServ, a proprietary software, to run its 150 plus cancer mailing lists. [12]. Licensing fees for for this software range depends on the number of lists and message volumes. Listserv mailing lists can be integrated into websites.

Choose a name for your HeC that is short and focused. Search the web for lists of other HeCs to see what kinds of names they have used. Which ones communicate the most information? People who are unfamiliar with your e-community should be able to tell its purpose without having to read the mission statement. The name you give to your new HeC should be different from the names of others you have found. When selecting the hosting service you will use, find out whether it has naming conventions that that would limit your choices.

Since 1995, the mission of the PPML has been to provide a forum for prostate cancer survivors, their families, and their supportive friends to exchange information about prostate cancer. Medical professionals sometimes also contribute to the discussions. We invite you to draw on the knowledge, experience, and empathetic support of our more than 1300 participants by subscribing to our discussion list and presenting any questions you may have. Questions and responses to questions are what have made the PPML the valuable resource that many of us have found it to be for many years. [ACOR Prostate Problems (PPM) Mailing List]

Your HeC mission statement describes the vision of you want your community to be. It should spell out what type of community you’re founding, its purpose and intended members. As the example above from the PPM list shows, mission statements for mailing list based HeCs can be short and informal, but they must explain to prospective members what kinds of help they can expect from the community if they join.

If you want to attract members to your new HeC, people have to know about it. There are many ways to publicize the birth of the new e-community. Some approaches are more systematic and labor intensive than others. Your promotion strategy will depend on how many people you can get to help you at this stage and the number of existing networks you can tap into.

An inexpensive and simple way to start getting the word out is for the people who are starting the HeC to add a message about it to their email signature lines, with enough information so that anyone interested will know how to subscribe. You could use a “snowball” strategy; ask people you know to forward the information to others they think might be interested. You can also send snail mail and email announcements with information about the HeC’s mission to staff at relevant advocacy, community health and social services organizations, and health care provider associations. When sending out these announcements, request that information about the new HeC be added to organizational websites, newsletters, and referral databases (remember to keep track of the organizations you have targeted so you can send them updated information as the HeC evolves).

If you have the technical skills and resources, establish a website for your HeC. When designing the site, get help from web experts to ensure that your site is easy to find using the major web browsers Include search terms and content that will be ranked high on Google and other web browsers. For example, for instructions on how to get high rankings on Google, go to www.apromotionguide.com/google.html [13]

Don’t limit your promotional efforts to online networking. Send press releases to mass media outlets and offer to be interviewed on public service programs. Join speakers’ bureaus and offer to talk about how the Internet can be used for social support. Use examples from your HeC and distribute flyers with information about it wherever you speak. If you or other HeC founders are professionals, bring information about your e-community to your professional meetings, network with colleagues who share their interest in the problem and ask them to help you publicize it in their home communities and other professional networks.

Even after you have enough members for lively and satisfying discussions, you still have keep promoting the community to compensate for natural attrition. In HeCs, members come and go unpredictably. Some may just not want to be exposed to so much information about the problem. Others may be facing job or family crises, unrelated to the purpose of the group, that prevent them from participating. If members have severe health problems, they may be forced leave their lists because they are too disabled to use the Internet or they die. One indication that an HeC is working well is that leaders aren’t the only ones shouldering this responsibility: members also begin telling the people they know about the benefits of the community and recruiting them, too ((Backstrom, Huttenlocher, Kleinberg, & Lan, 2006).

References

Backstrom, L., Huttenlocher, D., Kleinberg, J., & Lan, X. (2006). Group formation in large social networks: membership, growth and evolution. Paper presented at the 12th ACM SIGKDD Intl. Conference on Knowledge Discovery and Data Mining, Philadelphia, PA. [14]

Listowners must establish broad rules (group norms) for what is and is not acceptable on the list. These rules enable listowners to be proactive in preventing disruptions. Members are also more likely to view them as even-handed rather than arbitrary if things go wrong and the listowner has to enforce the rules. Later, rules may need to be adapted or modified as situations require, but this can then be done in consultation with members.

Because of the continuing flow of new members into HeCs, all members need to be reminded routinely about norms. In ACOR lists, members are first oriented to their rules through automated welcome letters. If HeC members are under extreme stress, they may have difficulty remembering their list’s norms.

The sample list of HeC "Rules of the Road" below is typical of the kinds of norms used by various ACOR lists. It is not comprehensive but it shows the range of rules that listowners have found necesary and useful.

• Interactions with other members should be positive: No name calling, sarcasm, or personal attacks.

• No telling others how to live their spiritual/religious lives.

• No political discussions.

• No sexual, religious, racial, or political jokes, or jokes that demean people with physical or mental handicaps.

• No "shoulding" each other--we share ideas, we don't demand that others accept them.

• No spam.

• No advertising or selling.

• No research without prior permission from the listowners.

• Honor copyright laws. When quoting published material directly, include the author and title of the source or the website where you found it.

• If there are questions about the appropriateness of any interaction, talk with the listowners privately first.

• If you are angry, wait for some time to pass before venting to the list.