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"As Hirsch and Silverstone (1992) argue, information technology poses unique challenges because it is both a set of artifacts to be consumed as well as a medium within which social relations are conducted."
(from Nafus and Tracey "Mobile Phone and Concepts of Personhood" in Katz & Aarkhus Perpetual Contact, p.208 ISBN 0521002664)


One of the most promising aspects of the rise of eHealth is the never-ending growth & widespread availability of peer to peer online communities (eCommunities), where people with specific common interests gather to share experiences, ask questions, or provide emotional support and self help. eCommunities are social networks formed or facilitated through electronic media. Although such communities already existed in the era preceding the growth of the world wide web (for example, in bulletin board systems and private networks that enabled peer to peer communications like PLATO), the primary medium for virtual communities today is the internet, in mailing lists, newsgroups, usenet discussion forums and more recently in web based social networks like Facebook or even in 3-dimensional virtual worlds (serious games) like [Second Life]. Health-related eCommunities often have the function and character of self-help support groups and are then also called electronic pr online support groups. The number of Health eCommunities available to anyone is constantly growing. For example, in April 2004 Yahoo!Groups listed almost 25 000 electronic support groups in the health and wellness section[1]. In October 2006, the number is over 29,000[2]

Based on our own analysis, the vast majority of Health eCommunities were created by small groups of patients and caregivers, without any significant involvement from health professionals. This fact has complicated the building of scientific, validated data about these communities, since very little stuctured and large-scale research has been conducted so far. This lack of validated research is a serious problem, since many, if not most, health professionals have not joined any Health eCommunities and do not understand their value as a source of accurate & timely information & support.


Although plenty of descriptive and anecdotal information exists on the potential benefits and harms of online peer support, we sought evidence—beyond case studies and qualitative work—for the efficacy of virtual communities as stand alone or adjunct interventions in health care and their impact on health related outcome measures.


Contents

[edit] General Research

[edit] History of Online Communities

The author surveys current literature on communities of practice and their potential development using networked technology and remote collaboration, specifically with respect to World Wide Web (WWW) communication tools. The vast majority of the current literature in this new research area consists of case studies. Communities of practice have the following components that distinguish them from traditional organizations and learning situations: (1) different levels of expertise that are simultaneously present in the community of practice; (2) fluid peripheral to center movement that symbolizes the progression from being a novice to an expert; and (3) completely authentic tasks and communication. Supporting concepts include aspects of constructivism (i.e., ill-structured problems, facilitation, collaborative learning, and negotiated goals), community knowledge greater than individual knowledge, as well as an environment of safety and trust. Virtual communities are defined as designed communities using current networked technology, whereas communities of practice emerge within the designed community via the ways their participants use the designed community. Current networked technology has both advantages and disadvantages in emergent development of communities of practice. Because most collaboration is text-based, norms are reduced, enabling introverted participants to share their ideas on an equal footing with extroverts. However, the greatest problem with virtual communities is withdrawing, or attrition. This problem can be reduced somewhat through good facilitation techniques and adequate scaffolding, especially in the cases of online communication techniques and technical support. Finally, the author recommends further research questions and proposes a case study, whose purpose is to observe the effects of an emerging community of practice within the designed environment of a virtual community.”

[edit] Topology of Online Communities

[edit] Metaphors for Online Communities

[edit] Design of Online Communities

  • Design Principles for Online Communities. “What makes online communities successful? There are many indicators of success. Some are easily observed and measured, such as the number of people registered in the community, or the number who participate, or the number of messages posted, replied to or read over a certain period. How community members judge their community is also important. What do they like or dislike and how committed are they to the community? In this paper, we describe participatory community-centred development – an approach that relies heavily on iterative evaluation. We then point out that standard evaluation techniques are inadequate for evaluating online communities because they do not address sociability. Finally, we propose two approaches from research that can be tailed for evaluating online communities. Both attempt to draw directly on what community users want. The first is rooted in ethnography and the second is a form of heuristic evaluation. The paper ends with an agenda for developing these approaches to make them practical yet robust.”

[edit] Activities & Roles

[edit] Online Communities Facilitation

[edit] Structuring Conversation

[edit] Online Communities Participation

  • Ling, K., Beenen, G., Ludford, P. J., Wang, X., Chang, K., Li, X., Cosley, D. Frankowski, D., Terveen, L., Rashid, A., Resnick, P., Kraut, R. (2005). Using Social Psychology to Motivate Contributions to Online Communities (pdf). “ABSTRACT: Under-contribution is a problem for many online communities. Social psychology theories of social loafing and goal-setting can provide mid-level design principles to address this problem. We tested the design principles in two field experiments. In one, members of an online movie recommender community were reminded of the uniqueness of their contributions and the benefits that follow from them. In the second, they were given a range of individual or group goals for contribution. As predicted by theory, individuals contributed when they were reminded of their uniqueness and when they were given specific and challenging goals, but other predictions were not borne out. The paper ends with suggestions and challenges for mining social science theories as well as implications for design.”


People come to online communities seeking information, encouragement, and conversation. When a community re- sponds, participants benefit and become more committed. Yet interactions often fail. In a longitudinal sample of 6,172 messages from 8 Usenet newsgroups, 27% of posts re- ceived no response. The information context, posters’ prior engagement in the community, and the content of their posts all influenced the likelihood that they received a re- ply, and, as a result, their willingness to continue active participation. Posters were less likely to get a reply if they were newcomers. Posting on-topic, introducing oneself via autobiographical testimonials, asking questions, using less complex language and other features of the messages, in- creased replies. Results suggest ways that developers might increase the ability of online communities to support suc- cessful individual-group interactions.”

  • [Motivating participations by displaying the value of contribution]

Rashid, A., Ling, K., Kraut, R., & Riedl, J. (In press). In CHI 2006: Proceedings of the ACM conference on human-factors in computing systems. New York: ACM Press.
ABSTRACT
One of the important challenges faced by designers of online communities is eliciting sufficient contributions from community members. Users in online communities may have difficulty either in finding opportunities to add value, or in understanding the value of their contributions to the community. Various social science theories suggest that showing users different perspectives on the value they add to the community will lead to differing amounts of contribution. The present study investigates a design augmentation for an existing community Web site that could benefit from additional contribution. The augmented interface includes individualized opportunities for contribution and an estimate of the value of each contribution to the community. The value is computed in one of four different ways: (1) value to self; (2) value to a small group the user has affinity with; (3) value to a small group the user does not have affinity with; and (4) value to the entire user community. The study compares the effectiveness of the different notions of value to 160 community members.

[edit] Newcomers
[edit] Lurkers

[edit] Development of Commitment to Group

[edit] Development of Social Relationships online & offline

[edit] Conflict Management, Public Goods, and Social Loafing

Abstract: This paper reports the results of a qualitative study of motivation and barriers to employee participation in virtual knowledge-sharing communities of practice at Caterpillar Inc., a Fortune 100, multinational corporation. The study indicates that, when employees view knowledge as a public good belonging to the whole organization, knowledge flows easily. However, even when individuals give the highest priority to the interests of the organization and of their community, they tend to shy away from contributing knowledge for a variety of reasons. Specifically, employees hesitate to contribute out of fear of criticism, or of misleading the community members (not being sure that their contributions are important, or completely accurate, or relevant to a specific discussion). To remove the identified barriers, there is a need for developing various types of trust, ranging from the knowledge-based to the institution-based trust. Future research directions and implications for KM practitioners are formulated.

[edit] Health eCommunities Research

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Cancer-related electronic support groups as navigation-aids: Overcoming geographic barriers. Archived from the original on 2004-04-26 02:10:36. Retrieved on 12/01/2006 17:25:32.

Psychooncology. 2005 Mar;14(3):211-20. Hoybye MT,Johansen C,Tjornhoj-Thomsen T.

Health Psychol. 2005 Nov;10(6):855-62.

BMJ. 2004 May 15;328(7449):1166. Eysenbach G, Powell J, Englesakis M, Rizo C, Stern A. Full Text

Oncologist. 2002;7(6):555-68. Free Full Text Penson RT, Benson RC, Parles K, Chabner BA, Lynch TJ Jr.

The most important thing I found on the Internet, however, was not a website, but an online cancer discussion group called LUNG-ONC (http://listserv.acor.org/archives/lung-onc.html). LUNG-ONC is one of approximately 100 cancer mailing lists run by the Association of Cancer Online Resources (ACOR) (http://www.acor.org). Through LUNG-ONC, I was immediately able to connect with hundreds of people with lung cancer. This was invaluable—there is really no substitute for connecting with others who are surviving with your disease. The LUNG-ONC community consists of patients at every stage of disease and treatment, long-term survivors who provide inspiration to the newly diagnosed, family members, and health professionals with connections to the community. With the nonsmokers in the group, I discussed issues related to having a smoker’s disease and what it’s like to feel invisible within a stigmatized group. I found young mothers with lung cancer, with whom I could share that particular heartache. During chemotherapy, I shared information on dealing with various side effects. I also learned that other patients often have answers to practical questions, like where to buy a wig, or what type of pillow to use after surgery. Prior to my pneumonectomy, I was able to communicate with several people who had undergone pneumonectomies themselves and to benefit from their experiences. There were also several group members who offered useful advice on how to handle medical paperwork and insurance issues that inevitably become a major source of stress for every cancer patient. This sharing of practical or "nonclinical" information is typically seen by both patients and physicians as outside the physician’s purview. I do not know where this type of comprehensive support could be found other than on the Internet. There are relatively few face-to-face support groups for lung cancer. LUNG-ONC is available 24 hours a day, 7 days a week, and there is no commute. Because of the sheer numbers of patients online, I was able to find others just like myself, and I no longer felt like the only 38-year-old nonsmoker on the planet with lung cancer.

Am J Prev Med. 1999 Jan;16(1):1-9. Gustafson DH, Hawkins R, Boberg E, Pingree S, Serlin RE, Graziano F, Chan CL.

Women Health. 1997;26(1):65-84. Sharf BF.

Can J Oncol. 1995 Sep;5(3):379-80.

Can J Oncol. 1995 Sep;5(3):377-8. Links

[edit] Health eCommunities for Rare Disease


[edit] Books

  • Online Communication: Linking Technology, Identity, and Culture

ISBN 0-805-8373-10 Publisher: Lawrence Erlbaum Associates Author(s): Andrew F. Wood, Matthew J. Smith Format: Paperback Publication Date: Apr 1, 2001 Pages: 225 Online Communication provides an introduction to both the technologies of the Internet Age and their social implications. This textbook brings together current work in communication, political science, philosophy, popular culture, history, economics, and the humanities to present an examination of the theoretical and critical issues in the study of computer-mediated communication. Authors Andrew F. Wood and Matthew J. Smith introduce computer-mediated communication (CMC) as a subject of academic research, as well as a lens through which to examine contemporary trends in society. Online Communication covers such topics as online identity, mediated relationships, virtual communities, electronic commerce, the digital divide, and spaces of resistance. This text also examines how the Internet has affected contemporary culture and presents the critiques being made to those changes. This classroom resource will help students conceptualize the human uses of the Internet through an examination of emerging theories, offering explanations for what people are doing with this technology in social and communication contexts. Advanced undergraduates, graduate students, and researchers interested in the field of computer-mediated communication, as well as those studying issues of technology and culture, will find Online Communication to be an important step forward in studying the role of technology and mediated communication in today's society.

  • Consuming Technologies: Media and Information in Domestic Spaces

Book by Eric Hirsch, Roger Silverstone. 242 pgs. Contributors: Eric Hirsch, Roger Silverstone Publisher: Routledge Place of Publication: London Publication Year: 1994

  • Online Communication : Linking Technology, Identity, and Culture (LEA's Communication Series)

by Wood, Andrew F , Smith, Matthew J ISBN: 08058-3731-0 Publisher: Lawrence Erlbaum Associates Inc,US Publish Date: 01 April, 2001


Synopsis

Whether or not one believes the hyperbolic claims about the Internet being the biggest thing since the invention of the wheel, the Internet is a medium with great consequences for social and economic life. Doing Internet Research is written to help people discern in what ways it has commanded the public imagination, and the methodological issues that arise when one tries to study and understand the social processes occurring within the Internet. Each contributor to the volume offers original responses in the search for, and critique of, methods with which to study the Internet and the social, political, economic, artistic, communicative phenomena occurring within and around it. This book provides encouragement for readers getting started with Internet research and also provides perspective on this new and ubiquitous communication medium.

Bibliographic information Title: Doing Internet Research ISBN: 0761915958 Publisher: Sage Publications Inc Author(s): Steve Jones Format: Paperback Publication Date: Jan 31, 1999 Subject: Computers / General Information Dimensions: 5.98 x 9.18 x 0.81 in Pages: 328

[edit] See Also

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