Self-Characterized Illness Phase and Information Needs of Participants in an Online Cancer Forum

A diagnosis of cancer is the first step on a long journey of treatment, follow-up, and maintenance or survivorship. As 5-year survivorship rates among cancer patients increase, more cancer survivors will participate in online discussion forums and support groups to assist current cancer patients through their illness. Online venues are both optimal for the exchange of patient expertise and a safe space for patients to “meet” others undergoing similar experiences. This paper presents the findings of content analysis in a general cancer forum hosted on reddit.com (r/cancer). We delineate the types of conversations found on the forum and their conceptual “shapes” (e.g., call and response of question and answer, sharing of stories), and describe connections between self-characterized cancer illness phase and stated information needs. We find that online participants posting immediately after diagnosis or during treatment tend to ask for advice; survivors are more likely to share information in the form of personal narratives; and terminal patients seek acknowledgement from the community and validation in their choices. These findings demonstrate that information systems design tailored to illness phase can expedite information finding and increase information relevance for cancer patients and survivors.