AM note needs brief intro here--Ameier 15:46, 5 December 2006 (EST)

[edit] Creating and Sustaining Listowner Teams

In many cases, listowners establish their HeCs as solo enterprises. As long as your list is relatively small, you should be able manage the dual roles of list administrator and facilitator alone. As your list grows, these tasks become more and more complex and labor intensive and the list begins to need monitoring around the clock.

In ACOR, many founding listowners have adapted to the challenge of HeC growth by recruiting others to share in these tasks. Often they recruited members who had been on their lists for a long time and who had demonstrated their commitment to their respective lists. In ACOR, members’ spouses also participate in the lists. After their loved ones die, some of surviving spouses stay on their lists because they have become friends with other list members and want to stay in touch. A number of these surviving spouses have gone on to become members of listowner teams. If your listowner team is looking for new members for your list owner team, try contacting privately those surviving spouses who have stayed active on the list to see whether they feel willing and able to take on this new role.

Once listowner teams are established, team members must develop strategies for coordinating their efforts and dividing up the work. There are many ways to do this. If you founded the list, you may want to remain the main facilitator with other team members serving occasionally as backup facilitators and advisors in case of list disruptions. Alternatively, the team may decide to divide the responsibilities equally by scheduling week-long duty rotations for monitoring list activities. If your HeC spins off specialized lists or implements chat groups, team members may take the lead in managing those.

When a listowner team recruits recruit new members, more experienced team members have to be sure that the newcomers have the skills to do the job. New listowners may be well informed about the health problems that attracted them to their lists, but lack technical experience and skills. So they will need to spend time learning about the technical aspects of list management. Some ACOR listowners reported that they don’t feel very competent in the technical details of Listserv and rely on other more technically savvy listowners for help when problems arise. A link to the ACOR List Owner Manual [[1]] is provided on the Wiki homepage to provide technical assistance to neophyte and experienced listowners on listserv operations.

New listowners also need to learn about the personalities of the more active members and how to spot potential trouble-makers. On some lists, new listowners spend a period of time in training observing how more experienced teammates handle situations in which they have to enforce group rules. Listowner teams actively consult with each other in deciding how to handle members who are causing problems.

Listowner team members are volunteers and these jobs do not have specified term lengths. The team must be proactive in planning for the inevitable day when a member of the team decides to leave. ACOR listowners are sometimes forced to leave the team when their health deteriorates. Some who join their team while they were ill may decide to leave the team when their health improves because they want “to get a life” and don’t want to be immersed in illness-related concerns. Others may just burnout from the amount of work required. It is difficult to predict the situations that lead listowners to withdraw from their teams, and it can take a long time to find a replacement. Team members always have to be on the look out for potential recruits who they think could handle the job.

--Ameier2 12:49, 25 February 2007 (EST)

[edit] Spinning Off Smaller Groups

List size issues and how to manage large amounts of email

My mailing list is good because there are about 2,000 members of whom several hundred post, and people live in various countries (not just the USA), so there is a good variety of information, responses and advice offered. The list would be much less useful with only a few members. I appreciate the fact that “chat” is discouraged i.e. posts not at all relating to the cancer are discouraged. There are many posts and I wouldn’t want “chat” to clog up the posts each day. Nothing else I have come across for CLL type cancer compares with the value of this List for me and my friend.

It is difficult to say what the best size is for a list. It depends on what percentage of members post, the topic, the types of messages, and a host of other factors. Some lists can grow to be very big, with thousands of members from all over the world. Because most members of any list spend most of their time lurking, it is possible for a large list large to still generate a manageable number of messages. However,members often complain that they get too many messages from their lists. For some, the email volume can be overwhelming.

What can list members do to manage their list email? They take advantage of list digest formats, create folders in their email client for different types of emails (on treatment, from good friends, on side effects, etc.) or immediately delete emails that might be too stressful. It is easier for listmembers to organize the emails into folders if the subject line on the message is concise and accurately represents message content. On some email clients, it is possible to automate the sorting process by using email filters. For example, all emails from a certain user could automatically be put in a folder, or all emails with a certain drug in the title could go to another. List FAQs should include rules and recommendations for message subject lines so members will know what messages are about without having to open them.

Some HeCs publish their own online newsletters to inform members about activities sponsored by the HeC or in which members are participating. You can also use newsletters to introduce new members and provide educational and inspirational materials. With online newsletters, members can request to receive only the newsletter so they can stay in touch with the community but not be overwhelmed with messages.

When is it best to split the group? Perhaps a more specific mailing list/website can be created to assist those caregivers dealing with issues similar to mine, especially focused on Multiple Myeloma. It’s hard to find people who share my experiences, in my age group. (ACOR listowner)

When a list’s size makes it unwieldy or when sub-groups seem to be forming naturally, sometimes listowners decide to split the list into two or more separate groups. Some lists split permanently into multiple smaller groups; others establish supplementary groups which provide additional functions the larger, original list did not. Both strategies may decrease or increase the number of emails any individual gets.

Keeping an overall list while supplementing it with a more specialized list seems the most likely way to maximize any listmember’s information and support. However, this strategy could also result in far too much email for anyone to handle. This strategy may be most appealing to lsit members who are more computer savvy and who know how to manage large amounts of email. As with any other situation, the decision to split the group should be made with input from all listowners as well as listmembers, and should be made with the best interests of all in mind.

[edit] Adding Functionality: Advantages and Limitations of Internet Media

If listowners and members have the resources and technological savvy to do it, HeCs can add new media at any time. The media choices that are currently available briefly described here categorized according to whether members are communicating mostly by email or have access to broadband Internet services. Decisions about which to choose and the timing of those choices will depend on the HeCs mission and range of activities.

[edit] Using asynchronous communication channels (no immediate response)

Bulletin boards/Message boards

Bulletin or message boards are quite similar to mailing lists, in that they allow for threaded messages and responses are not immediate, but differ in that the messages are posts to a website rather than automatically-delivered email messages. Some find this non-automatic aspect of message boards to be helpful in managing their time online. For those afraid of being overwhelmed by too many email messages, it may be easier to surf through threads on a website than try to organize their email inbox. Mailing lists with web-based archives, such as ACOR, may bypass this problem by allowing a hybrid of mailing list and message board features. A member of ACOR may set their list subscription to NOMAIL and choose to look through the archives of the list rather than have the messages delivered as email. The archives can be viewed as threads.

One ACOR member commented:

I do not use the mailing list now as it is just too much. There are so many messages that it can take all evening to look through if left for a while. When I have enough time I’ll probably start looking again. The problem is with the structure of a list - on a newsgroup you can see a title, decide you don’t want to look and skip the entire topic. On a mailing list it is not threaded that way so takes much longer. I do think they are good and provide a lot of information, just overwhelming.

A person with these preferences may be better served by a message board format or by using web-based archives rather than receiving emails.

[edit] Blogs

A blog (originally a contraction of the words web and log) is a type of webpage that allows for quick and easy updating of content as well as reader comments for each entry. Blogs are often used in journal format, and may be a good supplement to an online community that exists in another format (i.e., mailing list, message board, etc.). Individual members of the community or subgroups may wish to create blogs so that they can keep friends updated on their lives or vent their feelings without fear of “clogging up the list” with personal information. By having a separate but related medium for communication that some may find inappropriate (such as overtly religious discussion, political aspects of the topic, personal updates on treatment, emotional venting, etc.), those who wish to read such topics can do so while still respecting the wishes of other members who would rather not deal with those discussions. Many blogs link to one another, making it easy to create sub-communities of bloggers for various topics.

For those who want to start blogs, there are now a wide variety of free blog hosting services available, however many of them also require users to put up with popup ads. Google has just implemented a new free, blog hosting service,BlogSpot [2] that is user friendly and ad free.

[edit] Websites

Many online communities have corresponding websites that contain more information about the community, including FAQs, information about founders and important members, memorials to members who have passed away and pictures submitted by members. An advantage of a website is that the webmaster or webmistress can make as many pages as s/he likes, including many different types of media. Also, listmembers who are less computer savvy can usually navigate a simple website without too much difficulty; this option may be the best if your goal is to reach as many members of the community as possible. Because communication is difficult with a website (it usually occurs in the form of guestbooks, unless there is a message board embedded in the site), these are not a good stand-alone option for an online community. As a supplement, however, they are quite popular.

[edit] Using synchronous communication channels (immediate response)

Chat

Chat has long been a very popular form of communication online. It is simple and usually very easy to use. A chat room may be public or private, small or large. Many online communities that generally use a different medium use chat as a supplement. For example, people who usually post messages back and forth may decide to “meet” online at a specific time in a chat room, in order to communicate in a way that seems more natural. Research suggests that immediate forms of communication may be preferable for more emotional talks and may make people feel more supported (as compared to non-immediate forms such as email). To a large degree, how supported a person feels in various communication media is a matter of personal preference, so listowners should offer a wide variety of ways for members to talk to one another. IRC, or Internet Relay Chat, is a specific form of chat. Very popular particularly in the earlier days of Internet use, this format allows group chat in IRC channels as well as private messages.

Instant messaging (IM)

Instant messages are one-on-one forms of chat. Like text messages on phones, instant messages are a way to talk to another person quickly and receive an immediate response. These programs are also easy to use and can be set up to be more private than chat rooms generally allow. An individual can set up their account so that only certain people can message them. This maintains privacy and prevents problematic communications like solicitation or sexual harassment. Many IM programs allow for small mini-chats between multiple users, which some may find more manageable than larger web-based or IRC-based chat.

Avatar-based virtual worlds

Virtual worlds are far more complex than most other formats for online communication (email, chat, etc.), but may offer unique benefits to their users. In these worlds, people interact through avatars that they create. Avatars are symbolic online representations of individuals. Sometimes they closely resemble how the person looks in real life, and sometimes they look very different (not even human, in some cases). In virtual worlds, avatars interact with each other and with a virtual environment.

The experience in a virtual world is more immersive than communicating through other media. Avatars offer the possibility of using body language in addition to written language, voice chat that seems like an in-person conversation, and virtual physical interaction like hugs. Operating an avatar usually requires a fairly high degree of computer skills, which makes it less accessible for someone with limited technical ability or an older computer system. Very little research has been performed on virtual worlds, but it is clear from what exists that these worlds are very social and that their users feel that they make real and lasting connections with their online friends. It is unknown if these connections are stronger than those made in less immersive online media, like mailing lists.

Some virtual worlds require purchasing and/or downloading software, whereas some are available for free and are web-based. All are more complicated than sending an email or posting a message, but most are not as complicated as they may seem to most newcomers. Learning to use any new software takes time and effort, but to many users this investment is worthwhile. In addition, to many who have grown up playing video games, these worlds may seem more like second nature than other online communication applications. Their resemblance to the real world may also make them easier for some newcomers to understand than some of the more complex chat clients.

Other sites with information on virtual worlds

Wikipedia:Second Life [3]

Wikipedia: Virtual Worlds [4]

[edit] Markers and Reinforcers of e-Community Cohesion

Group cohesion occurs when members bond with each other and identify their personal interests with the goals of the group. Previous sections have discussed the importance of cohesion in HeC viability and effectiveness. HeC leaders and members need to take note when members initiate activities that could strengthen community cohesion and encourage them. In-person contacts and larger gatherings of HeC members can strengthen those emotional ties and sense of affiliation to the larger community. When members collaborate virtually on small scale projects and organize gatherings of HeC members, they create more ways to relate to each other and opportunities to play rewarding new roles. Successful completion of projects demonstrates to members that the community is achieving its purpose, increases member satisfaction and further reinforces community cohesion. This section describes HeC activities that serve as markers that the community is becoming more cohesive and what listowners should take in to account when deciding whether to promote them.

In-person contacts

When listmembers begin to form close relationships, they often want to meet in person. This desire is quite common, and many online groups have both informal and formal meetings for members. Individual members who become close may meet casually. List members may want to organize a large meeting so that many members can get acquainted with each other in person at the same time.

Often, members who discover that they live geographically close to one another will begin to meet regularly in person. There are many stories of online community members who were, for instance, stranded on September 11th, 2001, or in need of a place to stay for cancer treatment, or any of a number of difficult situations, and were offered assistance by members of their online community. In-person meetings can help form and strengthen bonds between online friends, and may be helpful in increasing social support in the group.

Listowners generally are not involved very much in informal meetings between members. They may need to get involved if the meetings become formal, planned events that are discussed on-list. In addition, LOs may need to intervene if a clique forms that discusses their meetings very often on-list, irritating other members by making them feel excluded.

Community projects

Many members of online groups find that creating something tangible, like a quilt or cookbook, is an excellent way of coping with the illness or problem that caused them to seek out the list. The desire to do this may be similar to the desire to create an advocacy group, but these projects may be easier for many to handle. Creating a physical object from which all list members can benefit, like a book or CD, allows each member to have a reminder of their effort with them in their everyday lives. Members may start by working on projects that give them new ways to contribute to the group that are not directly related to their shared problems such as cookbooks, and commemorative quilts. Others may ask list members to help with local projects to aid people who suffer the same problem as listmembers. For example, members of the ACOR Pediatric Cancer list have participated in small scale educational projects such as compiling lists of things to ask doctors, things to take to children in the hospital, things not to say to the parents of children who have cancer.

Usually, it is the very motivated list members who take on leadership roles for these individual projects. Listowners should be careful to help them as much as possible while making sure that no one feels left out or resents the leadership position this person has given him or herself. Having someone else in charge of these projects can save an LO quite a bit of time and effort. However, if the project leader's behavior causes division and unhappiness in the group, the project itself may not be worth the effort.

Large meetings (conferences, retreats, etc.). Some online communities plan large events for members of the group. These may be explicitly group-related gatherings or may be instances of many group members attending the same event (for instance, members of a cancer mailing list traveling together to attend a conference related to their illness). Often these large meetings grow from smaller, informal meetings between friends who became acquainted through their lists.

Listowners should be careful about how to go about planning a large meeting, particularly if it grows out of smaller get-togethers. Some members may feel left out if they are not regular contributors, or if they are not part of the clique that started the meetings originally. In-person meetings are particularly good opportunities for lurkers or quiet members who feel uncomfortable communicating online to meet in a situation in which they may feel more comfortable approaching other group members.

List-led research

Some lists may perform research projects, either on their own or in conjunction with a research institution. One ACOR list helped create a tissue bank to further research into their illness, and another initiated surveys on their rare cancer to help find possible contributing factors. There are also many members of lists who are researchers or professionals in a research-related field in their offline lives, and these members may organize informal research to benefit the list. For example, it may help members of a list to know that a certain percentage of list members are at stage 4 in their cancer, and a certain percentage had various side effects on a certain drug. Though such topics are often discussed, some lists compile these facts to make this information easier to find.

[edit] HeC activism

Advocacy on-list can take many forms. Members may circulate online petitions; gather money from other members to make donations to charities; work with journalists and pharmaceutical companies; and create new groups whose mission is specifically for advocacy. HeC policies about advocacy vary. Some allow unlimited posts about advocacy and fund raising requests for other related non-profit organizations. Some have engaged in email and snail mail letter writing campaigns on specific legislation. Some ACOR lists allow member to use their lists to recruit volunteers for outside advocacy campaigns.

As a listowner, you can play a key role as an advocate. You can encourage your listmembers to take constructive action on issues by making sure that they have the information they need to articulate their positions effectively. You can provide links to free online petition hosting services, like ipetition.com [5]. You can notify members of offline forums and encourage them to attend. One example of effective advocacy in ACOR is the listowner who created a website linked to his lists that included sections devoted to information on advocacy. He also established mailing lists to facilitate advocacy activities and a discussion forum on the website to address advocacy-related topics. He used the advocacy mailing list to facilitate the development of a foundation for patient advocacy and recruited experts in the field to serve on advisory boards for the HeC website and the foundation.

Listowners can also represent their HeCs to other organizations. You could volunteer to serve as a public speaker or participate in conferences, or serve as a member of advisory boards for the websites of advocacy organizations.

Challenges of HeC-based advocacy

Advocacy on lists can have both positive and negative impacts on members. As with many things, moderation is probably best. Particularly in many mental health and chronic or acute illness online communities, members feel inspired to do something positive to help others affected by their condition or to educate the larger population about it.

I do not like the unspoken pressure on the xxxxxxxx cancer list to do advocacy work. I’m sick. I’m tired. I have a family. I have a job. I don’t want to be pressured into ribbons and colors and walk for the cure or whatever.(ACOR member)

As the quote above points out, though, many of these activities can be labor-intensive, and not everyone copes with their illness by becoming active. Some people may be receptive to exhortations to join in advocacy activities at some times, but may find it too overwhelming at others. Because many members of physical and mental health related online groups are sick and/or dealing with major hurdles in their offline lives, helping others online may ask too much of them.

As a listowner, you may have to temper the excitement of “advocacy advocates” on your list. To keep the peace, you may have to send messages to the list periodically reminding members that it is okay not to participate and make sure that activist members don’t harrass those who choose not to participate. Ask those who are interested in advocacy to label their emails as on that topic. so those members who interested--and those not interested--can use the list in ways that benefit them most with the least stress.

If your list is affiliated to an offline 501-c3 non-profit organization, members may not be alloweed to use the list for political activities. If you are an LO on such a list, you need to alert members about these rules and discourage them from using list in ways that might endanger the organization's tax-free status.