[edit] What is this WIKI?

The ACOR LO WIKI is designed to help:

• ACOR listowners in building & maintaining a current and state-of-the-art ACOR Listowner Manual,
• anyone interested in building efficient eCommunities (Online support groups)
• anyone interested in researching eCommunities, and
• anyone interested in using eCommunities to conduct research.

It is also the place where we will publish all documents related to a dissemination grant from the Robert Wood Johnson Foundation. The dissemination grant is a follow-up on the Health eCommunities Research Project. Some of the content is based on the ACOR's development history. The ACOR Network of Cancer Survivors & Caregivers was created in 1996 to provide, in a supportive environment, accurate & timely information to anyone effected by cancer. The focus has always been on quality information. Our activities have, from the beginning, been conducted through disease-specific eCommunities. As we became one of the largest organized center of health eCommunities on the internet ACOR also became a pole of online research about eCommunities and their members. We believe sharing our expertise will be helpful to others looking to develop efficient online communities. The wiki will be used as an online training guide based on the literature, HeC quantitative and qualitative data and feedback from ACOR listowners, with tips about:

• how to improve mailing list communication and
• orient new members,
• share how lists successfully manage disagreements,
• develop group norms about message content and
• communicate best practices for successful mailing lists

The wiki also include background information about the requirements for researchers to conduct online research, including ethics, IRB and a knowledge base of the research conducted on Health eCommunities.

[edit] Why this wiki?

With the maturation of ACOR eCommunities, it is critical to move toward greater use of evidence-based mailing list practices.

1. As leaders in a virtual community, listowners want more information about best practices and to contribute to building the evidence;
2. eCommunities have different expectations, norms and needs. Sharing best practices and providing online training may enable listowners to meet these needs.

In the United States over 50% of all Internet users regularly stay in contact with an online group. There are literally tens of thousands of health-related eCommunities. Surprisingly, there is no well-developed guide for anyone interested in reading or helping develop best practices for medical eCommunities. It is our hope that the use of this participatory software will bring together the incredible know-how accumulated by the countless volunteers who have donated so much of their time to help others suffering from the same conditions. This wiki, although originally based on the large body of experience shared by the listowners of more than 150 cancer-related eCommunities, belongs in fact to all those who have quietly helped transformed the care received by so many patients suffering from rare to common diseases.

[edit] Who is the intended audience?

Its primary audience is composed of (by descending order of importance):

• listowners (LOs) and members of all ACOR online cancer-related eCommunities
• listowners (LOs) and members of non-ACOR online cancer-related eCommunities
• developers of other cancer Internet resources and members of related advocacy groups

Its secondary audience is composed of:

• health care providers
• Researchers in the field of eHealth

[edit] What are efficient eCommunities?

eCommunities have played a key role in community networks ever since the rapid development of the Internet in the 1990's. Those forums permit direct interaction among community members. They provide a place where precise issues can be discussed and information can be shared quickly and easily. They are one of the first examples of UGC (User Generated Content). Currently 5 out of the 10 fastest growing websites are UGC. The terms "forum" and "online communities" are often used to refer to a wide variety of technologies, ranging from chat rooms to realtime video conferencing. But in this wiki we are concerned only with text-based, asynchronous group discussions, mediated through email, with use of LISTSERV software. Participants in such communities can log in at their own convenience and read whatever messages have been posted since their last visit. Health eCommunities are usually devoted to a specific medical condition such as a specific cancer type, but others revolve around issues, such as survivorship, coping, caregiving etc. ACOR hosts the majority of the cancer listservs. The rest are hosted by a number of other different agencies/individuals. Many of the ACOR listservs are considered to be examples of high-quality and efficient health eCommunities. Efficient Health eCommunities all share the following:

[edit] Fresh content, all the time

Active eCommunities are always full of new topics to read and discuss because the content in these communities is created by the members themselves. Since the content is always new, there's always a reason to return to the community, either by

• receiving via email the members' messages in single or in aggregate form or
• through a web interface by reading the threaded conversations.

[edit] Member-created value

All of the discussions and other content in our communities and associated knowledge-base websites are created by members themselves. As more people participate, the value of each community grows. Health Communities are not a replacement for the doctor-patient relationship but rather are online spaces that empower patients and caregivers to reach out and communicate with one another. For rare diseases, those Health eCommunities may very well be the primary source of information for the patients who can find the few specialists in their condition.

[edit] Strong Structure

Health eCommunities are places where people are free to speak their minds, but do so in an organized and safe setting. All our communities have human monitors who welcome new members, initiate discussions and monitor members’ postings to ensure they abide by community norms and rules. Independent surveys show that personal sharing and support – connecting with others going through a similar situation – are as important to people as acquiring medical information about a condition. Health eCommunities answer this need.

[edit] How to build a successful eCommunity?

For a successful online forum, several elements are essential:

[edit] Good software

Community software can be email-based, chat-based or web-based. For the purpose of this WIKI we only look at the email-based solutions.

[edit] Clear Purpose

The first step is to think carefully about why you want to develop a new eCommunity. In other words, you must define and articulate your purpose. Who do you expect to participate, and for what purposes? These questions are often glossed over in a community networking plan ("... and of course, we'll have a community area...") but it's crucial to consider them. Unless your eCommunity fulfills a clearly identifiable purpose, it is very likely to languish. People who simply enjoy online discussion for its own sake already have tens of thousands of Web forums, Usenet newsgroups, mailing lists, IMs, PMs, and IRCs to occupy their time. It's absolutely critical to define a specific purpose that distinguishes your community from all the others already existing out there. You are most likely to succeed if your eCommunity address the immediate, real-world needs of your constituency. Before embarking on this long journey you should verify if there are no existing online resources that already provide access to similar communities. Start from a real problem or need, and then think about how (and whether!) an online community might fill the need. For an in-depth discussion of the value/problem associated with duplicated medical online communities see Duplicated lists.

[edit] Experienced Hosts / Strong Leadership

An eCommunity host, monitor or moderator (commonly called listowner), is someone who takes primary responsibility for the care and feeding of an online community. The host sets the tone, establishes ground rules, initiates topics of discussion, encourages participation, and generally tries to ensure that the community serves the purpose for which it is intended. This role is especially important in the early stages of community building, as it takes a considerable amount of planning and effort to get a new community off the ground. Once a critical mass of participants has joined, the host can usually relax a bit and let the discussion roll along on its own steam, but it still helps to have someone keeping a watchful eye over the proceedings. Note: In all lists, at some point in time, a new subscriber will barge in and disturb the normal functionning of the community. It is imperative for the community listowner to monitor the list and act on the subscription options of the new member.

[edit] Interested Participants

People need several things in order to participate in online communities:

• Time
• Motivation
• Equipment (hardware, software, and an Internet connection)
• Training (computer and Internet skills, plus understanding of online forums)

If any one of these is missing, your online community project is likely to fail. Think especially about the first two items on the list. It takes a significant amount of time to participate in an online community. Is your target audience sufficiently interested in the subject of your community to get involved? Are the members also convinced that the community has something concrete to offer them. For most people, participation in public discussions on a community network is an "extra" -- you're competing for their attention against all the other resources they are using in their scarce free time. For eCommunities using Listserv, the lack of computer skills of the subscribers will have a negative impact on the listowner, since she/he will have to help someone who has difficulties understanding that computers are "dumb" machines, unable to deal with the slight changes that are so trivial for the human brain. The most usual problems faced are the lack of understanding of people that the smallest change in their email address will result in their inability to send a message to the list.

[edit] How to manage the community (Technical Questions)?

Listserv is a complex software and requires some understanding of how it functions to be able to respond to the technical problems subscribers will encounter. As a starting point you should consult ACOR's own Listserv FAQs. If this doesn't answer your question you can also consult an online version of LSoft Owner Manual.

You may also, if you are an ACOR listowner, ask your question to the ONCOLISTS listwoners community. If you are still looking for an answer we suggest you then try asking an LSoft list.

[edit] How to manage the community (Moderation Questions)?

[edit] Additional Reading

• Building a Successful Community

From COMMUNITY-BUILDING ON THE WEB by Amy Jo Kim

Page title: About the LO-Wiki
Revision ID: 2986
Date accessed: Thursday, September 2, 2010
Stable URL: http://lo-wiki.acor.org/index.php/About_the_LO-Wiki
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