How Cancer Patients Use the Internet to Search for Health Information: A Scenario-Based Think Aloud Study (Preprint)

BACKGROUND Cancer patients increasingly use the internet to seek health information. However, thus far, research treats online health information-seeking (OHIS) behavior in a rather dichotomous manner (i.e., approaching or avoiding) and fails to capture the dynamic nature and evolving motivations that patients experience when engaging in OHIS throughout their disease trajectory. Insights can be used to support effective patient-provider communication about OHIS and can lead to better-designed online health platforms. OBJECTIVE This study explores patterns of motivations and emotions behind cancer patients' online information-seeking at various stages of their disease trajectory, as well as the cognitive and emotional responses evoked by OHIS via a scenario-based think aloud approach. METHODS In total, 15 analogue patients were recruited, representing cancer patients, survivors, and informal caregivers. Imagining themselves in three scenarios: pre-diagnosis phase (n=5), treatment phase (n=5), and cancer survivor (n=5), patients were asked to search for online health information while prompted to verbalize their thoughts. Two researchers independently coded the sessions, categorizing the codes into broader themes to comprehend analogue patients' experiences during OHIS. RESULTS Overarching motives for OHIS included reducing uncertainty, seeking reassurance, and gaining empowerment. At the beginning of the disease trajectory, patients mainly showed cognitive needs, while this shifted more towards affective needs in the subsequent disease stages. Analogue patients’ OHIS approaches varied from exploratory to focused, or a combination of both. They adapted their search strategy when faced with challenging cognitive or emotional content. OHIS triggered diverse emotions, fluctuating throughout the search. Complex, confrontational, and unexpected information mainly induced negative emotions. CONCLUSIONS This study provides valuable insights into cancer patients’ motivations underlying OHIS, and the emotions experienced at various stages of the disease trajectory. Understanding patients' search patterns is pivotal in optimizing online health platforms to cater to specific needs. Additionally, these findings can guide clinicians in accommodating patients’ specific needs and directing patients toward reliable sources of online health information. CLINICALTRIAL