Engler, Jennifer; Adami, Sandra; Adam, Yvonne; Keller, Bettina; Repke, Tim; Fügemann, Hella; Lucius-Hoene, Gabriele; Müller-Nordhorn, Jacqueline; Holmberg, Christine
Patient Education and Counseling
Objective To understand what cancer patients expect and may learn from other patients’ experiences, as analyzed and sorted for presentation on a website called krankheitserfahrungen.de (meaning “illness experiences”). Methods Mixed methods approach including log file analyses, survey data analyses and thematic analysis of focus group discussions. Results Users highly valued the wide range of patient experiences presented. The academic leadership of krankheitserfahrungen.de made them trust the information quality. Reading, watching and listening to other cancer patients’ experiences gave users a feeling of hope and confidence. Searching for persons with similar experiences was a major way of navigating the website. Conclusion Patient narratives as presented on krankheitserfahrungen.de provide a helpful resource, supporting cancer patients’ engagement with their disease. Having access to such research-informed accounts of everyday cancer experiences was seen as a great contribution to existing available patient information. Practice implications When health information websites include experiences, they should adhere to quality standards of qualitative research and encompass a wide range, so that users are able to find patients similar to themselves. Filter options are a helpful tool. A mix of written text and videos is beneficial, as users have different preferences. The inclusion of patient photographs and video interviews facilitates authenticity and closeness.