Description, characterization, and evaluation of an online social networking community: the American Cancer Society’s Cancer Survivors Network

• Published in: Journal of cancer survivorship Vol. 12; no. 5; pp. 691 - 701
• Main Authors: Fallon, E. A., Driscoll, D., Smith, T.S., Richardson, K., Portier, K.
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.10.2018; Springer Nature B.V
• Subjects: American Cancer Society - organization & administration; Cancer; Cancer Survivors - statistics & numerical data; Caregivers; Evaluation; Female; Head & neck cancer; Health Informatics; Health Promotion and Disease Prevention; Humans; Internet; Male; Medicine; Medicine & Public Health; Middle Aged; Networking; Oncology; Online Social Networking; Primary Care Medicine; Public Health; Quality of Life Research; Social Networking; Social networks; Social organization; Surveys and Questionnaires; United States; United States; Neoplasm (MeSH term); Evaluation studies (MeSH term); Social support (MeSH term); Social networking (MeSH term); Cancer survivors (MeSH term); Internet (MeSH term)
• ISSN: 1932-2259; 1932-2267
• DOI: 10.1007/s11764-018-0706-8

Purpose To describe (a) the conceptualization, purpose, and features of The American Cancer Society’s Cancer Survivors Network® (CSN; http://csn.cancer.org ), (b) the ongoing two-phase evaluation process of CSN, and (c) the characteristics of CSN members. Methods An online opt-in self-report survey of CSN members ( N  = 4762) was conducted and digital metrics of site use were collected. Results Annually, CSN attracts over 3.6 million unique users from over 200 countries/territories. Most commonly used site features are discussion boards (81.1%), the search function (63.8%), and the member resource library (50.2%). The survey sample is mostly female (69.6%), non-Hispanic white (84.1%), and self-identified as a cancer survivor (49.8%), or both cancer survivor and cancer caregiver (31.9%). A larger number of survey respondents reported head and neck cancer (12.5%), relative to cancer incidence/prevalence data. Conclusions The volume of CSN traffic suggests high demand among cancer survivors and caregivers for informational and/or emotional support from other cancer survivors and caregivers. CSN may be particularly beneficial for individuals with rare cancers. Furthermore, this study documents a group of individuals whose cancer experience is multifaceted (e.g., survivors became caregivers or vice versa), and for whom CSN has the capacity to provide support at multiple points during their cancer experiences. Implications for Cancer Survivors CSN is a free, internet-based social networking site available to all cancer survivors and caregivers, worldwide. Evaluation of the site is ongoing and will be used to inform improvements to usability, reach, recruitment, retention, and potential health impact(s) of this valuable resource.