How New Subscribers Use Cancer-Related Online Mailing Lists

BACKGROUND: Online cancer-related support is an under-studied resource that may serve an important function in the information seeking, care, and support of cancer patients and their families. With over 9.8 million cancer survivors (defined as anyone living with cancer) in the United States alone and the number growing worldwide, it is important to understand how they seek and use online resources to obtain the information they need, when they need it, and in a form and manner appropriate to them. These are stated cancer communication goals of the US National Cancer Institute. OBJECTIVES: Our purposes are to (1) present background information about online mailing lists and electronic support groups, (2) describe the rationale and methodology for the Health eCommunities (HeC) study, and (3) present preliminary baseline data on new subscribers to cancer-related mailing lists. In particular, we describe subscribers' use of mailing lists, their reasons for using them, and their reactions to participating shortly after joining the lists. METHODS: From April to August 2004, we invited all new subscribers to 10 Association of Cancer Online Resources mailing lists to complete Web-based surveys. We analyzed baseline data from the respondents to examine their perceptions about cancer-related mailing lists and to describe how cancer patients and survivors used these lists in the period shortly after joining them. RESULTS: Cumulative email invitations were sent to 1368 new mailing list subscribers; 293 Web surveys were completed within the allotted time frame (21.4% response rate). Most respondents were over age 50 (n = 203, 72%), white (n = 286, 98%), college graduates (n = 161, 55%), and had health insurance (n = 283, 97%). About 41% (n = 116) of new subscribers reported spending 1 to 3 hours per day reading and responding to list messages. They used the mailing lists for several reasons. Among the most frequently reported, 62% (n = 179) strongly agreed they used mailing lists to obtain information on how to deal with cancer, 42% (n = 121) strongly agreed they used mailing lists for support, and 37% (n = 109) strongly agreed that they were on the mailing lists to help others. Smaller proportions of new subscribers strongly agreed that others on the mailing lists had similar cancer experiences (n = 23, 9%), that they could relate to the experiences of others on the lists (n = 66, 27%), and that others on the list gave them good ideas about how to cope with cancer (n = 66, 27%). CONCLUSIONS: Cancer-related online mailing lists appear to be an important resource, especially for information seeking but also for support of cancer survivors. These were the primary motivators most members reported for joining mailing lists. The modest proportion of subscribers who strongly agreed that they could relate to others' cancer experiences (as well as similar responses to other process questions) is undoubtedly due at least in part to the short duration that these subscribers were involved with the mailing lists. Emerging data, including our own, suggest that mailing lists are perhaps under-used by minority patients/survivors. These preliminary data add to a growing body of research on health-related online communities, of which online mailing lists are one variant.