Civilization rests on the fact that we all benefit from knowledge which we do not possess. And one of the ways in which civilization helps us to overcome that limitation on the extent of individual knowledge is by conquering ignorance, not by the acquisition of more knowledge, but by the utilization of knowledge which is and which remains widely dispersed among individuals.

-- Friedrich Hayek,
Law, Legislation, and Liberty, vol. 1: Rules and Order

Let's stop trying to dumb down people through technology. Let's step back and build technology that will make sense in the everyday lives of those who use it, that will empower them to use their evolved brain in a meaningful way.

--Danah Boyd

[edit] What is this WIKI?

The ACOR LO WIKI is designed to help:

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

This is also the place where we will publish all the 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 ACOR's development. In 1996 the ACOR Network of Cancer Survivors & Caregivers was created to provide accurate and timely information in a supportive environment to anyone effected by cancer. The focus has always been on quality information. From the beginning, our activities have 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 basis 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
• how to orient new members
• share how lists successfully manage disagreements
• develop group norms about message content
• communicate best practices for successful mailing lists

The wiki also includes 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?

As our eCommunities have come to maturity, we have gained more evidence about how they work best. We can all benefit from putting that information to use.

1. As leaders in a virtual community, listowners want information about best practices and will now have a place to contribute their experiences.
2. eCommunities have different expectations, norms, and needs. Sharing best practices and providing online training can enable listowners to meet these needs within their own unique eCommunities.

In the United States over 50% of all Internet users regularly stay in contact with an online group. Although there are literally tens of thousands of health-related eCommunities, surprisingly there is no well-developed guide for people interested in learning or helping to develop best practices for medical eCommunities. We hope the use of this participatory software will consolidate the incredible know-how accumulated by the countless volunteers who have donated so much of their time to help others dealing with the same health problems. 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 transform the care received by so many patients with diseases and conditions from rare to common.

[edit] Who is the intended audience?

In descending order of emphasis, the primary audience is:

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

Its secondary audience is:

1. health care providers
2. Researchers in the field of eHealth

[edit] What are efficient eCommunities?

First we must define eCommunities. They have played a key role on the internet ever since its rapid development in the 1990's. These forums permit direct interaction among community members, providing 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 community" are often used to refer to a wide variety of technologies ranging from chat rooms to real-time video conferencing. In this WIKI we are concerned only with text-based, asynchronous, group discussions through email using 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 a 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

In our communities and associated knowledge-base websites, all discussions and other content 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, a Health eCommunity may very well be the primary source of information for members who share information from the few specialists for their condition as well as what they find themselves through often extensive research. 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] Strong Structure

Health eCommunities are places where people are free to speak their minds, but in an organized and safe setting. All our communities have human monitors who welcome new members, initiate and participate in discussions, and monitor members’ postings to ensure they abide by community norms and rules.

[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. Define and articulate your purpose. Whom 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 clear 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 the things that distinguish your community from all the others already existing out there. You are most likely to succeed if your eCommunity addresses the immediate, real-world needs of your constituency.

Before embarking on this long journey, make sure there are no existing online resources that already provide 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 on a mailing list) is someone who takes primary responsibility for the "care and feeding" of an online community. The host sets the tone, establishes ground rules, initiates and may participate in 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 on the proceedings. It can be quite a balancing act to to maintain discipline within the bounds of freedom allowed by the list. See below, "How to manage the community," for more information.

[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 your community's subject to get involved? Are the members convinced 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're using in their scarce free time.

For eCommunities using Listserv, the subscribers' lack of computer skills will have a negative impact on the listowner. Listowners must help those who don't understand computers - often at the most stressful time of their lives, when they are dealing with a recent diagnosis of a life-threatening disease. Unfortunately, computers are "dumb" machines unable to deal with slight changes that are trivial for the human brain. Common problems involve people who don't understand that the smallest change in their email address results in inability to send a message to the list, who subscribe under one address and then try to post from some other address, or who don't understand the subscription "command" system.

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

Listserv is a complex software, requiring 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 the LSoft Owner Manual.

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

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

Some listowners provide a great deal of list content or post frequent links to web articles; others post seldom and handle administrative issues. Regardless of content style, every listowner must also moderate -- that is, keep peace on the list.

It is vital to set broad rules for what is and is not acceptable on the list. Rules enable the listowner to be even-handed in enforcement, rather than attempting to stop problems as things go wrong. Later rules may be adopted or modified as situations require. Each ACOR list sends its rules to every new member. In a Health eCommunity, these rules might include:

• No advertising or selling
• No research without prior permission from the listowners
• No insults
• No spam
• No telling others how to live their spiritual/religious lives
• No political discussions
• No "shoulding" each other--we share ideas, we don't demand that others accept them
• If there are questions about the appropriateness of any interaction, talk with the listowners privately first

Being slow to take personal offense is a very handy quality for a list moderator. A calm, patient, forgiving, and understanding attitude goes a long way toward settling disputes, whether directed at the listowner personally, the list in general, or particular list members.

Cultivate tact. Well-intentioned people don't set out to hurt one another, but it does happen. Misinterpretations of written communication are inevitable. Learn how to avoid them when possible and to disarm them when necessary. Having a good role model can help, but many listowners will have to make do with trial-and-error. Experience does help; most listowners get a lot of practice. The experienced listowner can be a good role model for the rest of the list.

It is important to be quick and sensitive in noticing posts that could be misinterpreted or that are unsavory in some way. Respond to such posts as soon as possible. This is one area in which it is easy to see the value of having more than one listowner, since no one person can monitor a list every moment.

Note: In all lists, at some point in time a new subscriber will barge in and disturb the normal functioning of the community. It is imperative for the listowner to monitor the list and act. In ascending order of severity, action might be a private warning off-list; a public warning on the list (often quoting the problem member but perhaps not naming him or her, depending on how great the problem is or the degree of maliciousness perceived); or action on the subscription options of the member, such as putting the member "on review" (reading all the member's posts before allowing them to go to the list), ejecting the member from the list, or even revoking the member's eligibility to join any affiliated mailing list.

[edit] Additional Reading

• King, Amy Jo. Building a Successful Community. COMMUNITY-BUILDING ON THE WEB. Retrieved on 12/01/2006.

• Benton Foundation. Building Online Communities: Transforming Assumptions Into Success. Retrieved on 12/01/2006.

• Benton Foundation. Community Building Resources. Benton Foundation. Retrieved on 12/01/2006.

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