The importance of the Internet as a health resource is demonstrated by the fact that 8 out of 10 Internet users in 2005 reported looking for health information online, most commonly seeking information on specific diseases and certain medical treatments [1]. In the United States, it is estimated that 56.3 million people actively seek information about chronic diseases [2], and the information they gather affects their health choices [3, 4]. Internet users report employing the information they find on the Internet to diagnose health problems, enhance their medical care, and to validate the advice they receive from doctors [5].
An estimated 100 million Americans report ever having been members of some type of online group, and 79 million Americans have become members of online support groups [6]. On the popular Yahoo site alone, users can choose from over 30000 health-related support groups. The World Wide Web and email now permit a variety of group communication formats, many of which are widely used and have been described in detail elsewhere [7]. Here, we will describe our work with one type of group format—the mailing list, also known as an email discussion group. In Internet mailing lists, email messages (asynchronous communication) from authorized senders (subscribers) may convey information and support to other list subscribers. In the case of eHealth support lists, many subscribers are living with similar health conditions or are caregivers to survivors.
Some sources estimate that as many as 1 in 4 disease information seekers join online discussion groups [8]. Approximately 23 million people are reported as very active in online communities [9]. Our recent count of 33000 health-related online self-help groups on Yahoo shows that participation in electronic support groups (ESGs) continues to grow. This estimate represents a 32% increase over the number reported by Eysenbach and colleagues in 2004 [10]. Although estimates vary greatly, millions of people in the United States and, increasingly, around the world are turning to online support groups to deal with health concerns. (Most online support lists are hosted in the United States but are accessible outside US boundaries. For a description of online support groups sited outside the United States, see [11]).
ESGs Within Virtual Social Networks
There is an ongoing debate about whether support lists should be considered ESGs, informal grass roots virtual organizations, or electronically networked communities.
Mailing Lists as Support Groups
Support mailing lists are similar to traditional offline self-help groups in that they are “composed of members who share a common condition, situation, heritage, symptom or experience [12].” eHealth support lists and offline self-help groups share the goal of helping people learn about and cope with a variety of risk factors, diseases, and conditions.
Typically, offline face-to-face support groups are small, composed of 10 to 12 members. In face-to-face groups, the small size makes it easier for members to interact with each other, to build trusting relationships, and for the groups to become cohesive [13]. By contrast, online mailing lists can have hundreds or even thousands of members, many of whom post messages infrequently, if ever. Using a liberal definition of participation—at least one post within a three-month period—Nonnecke and Preece found that only about 55% of subscribers to a virtual health support group could be described as active participants [14]. Those members who post with some regularity often become acquainted and emotionally bonded with each other, forming subgroups that function like cohesive face-to-face support groups. The impact of participation on lurkers, those who read messages but don’t write them, is unknown.
Currently, most ESGs appear not to be professionally facilitated but rely on peer leaders, making them more like self-help or mutual aid groups than professionally facilitated face-to-face support group interventions. The Association of Cancer Online Resources (ACOR) mailing lists we studied follow the peer leader model. Many of the listowners are extremely knowledgeable about health and cancer. These peer-leader listowners intervene both online and offline as needed to correct misconceptions, enforce group norms, and provide information, but they aim to do so as infrequently as possible [12].
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