Abstract
Although traditionally the primary information sources for cancer patients have been the treating medical team, patients and their relatives increasingly turn to the Internet, though this source may be misleading and confusing. We assess Internet searching patterns to understand the information needs of cancer patients and their acquaintances, as well as to discern their underlying psychological states. We screened 232,681 anonymous users who initiated cancer-specific queries on the Yahoo Web search engine over three months, and selected for study users with high levels of interest in this topic. Searches were partitioned by expected survival for the disease being searched. We compared the search patterns of anonymous users and their contacts. Users seeking information on aggressive malignancies exhibited shorter search periods, focusing on disease- and treatment-related information. Users seeking knowledge regarding more indolent tumors searched for longer periods, alternated between different subjects, and demonstrated a high interest in topics such as support groups. Acquaintances searched for longer periods than the proband user when seeking information on aggressive (compared to indolent) cancers. Information needs can be modeled as transitioning between five discrete states, each with a unique signature representing the type of information of interest to the user. Thus, early phases of information-seeking for cancer follow a specific dynamic pattern. Areas of interest are disease dependent and vary between probands and their contacts. These patterns can be used by physicians and medical Web site authors to tailor information to the needs of patients and family members.
Highlights
Thirty five years ago, Dr Franz Ingelfinger, a gastroenterologist and former editor of the New England Journal of Medicine, was diagnosed with esophageal adenocarcinoma
We examined anonymous large scale UserGenerated Content (UGC), provided by the Yahoo search engine to examine cancer-related information-seeking patterns
How likely are our seekers to be real cancer patients? We used a linear regression model to compare the frequency of each specific cancer type in the query log with its known ageadjusted incidence, age-adjusted 5-year relative survival, and the median age of diagnosis
Summary
Dr Franz Ingelfinger, a gastroenterologist and former editor of the New England Journal of Medicine, was diagnosed with esophageal adenocarcinoma. Patients need not be editors of a medical journal in order to face torrents of information gushing from the Internet. This barrage of ‘‘facts’’ challenges doctors’ role and authority. In the case of cancer diagnosis, most patients search the Internet for cancer information, usually prior to their initial meeting with an oncology specialist [2]. Their information needs appear to differ by cancer type [3]. Studies have shown that patients tend not to share informal information with their doctors [4,5,6]
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