Information needs, communication and usage of social media by cancer patients and their relatives

PurposeThe aim of this study was to evaluate cancer patients' need for information, their communication and usage of social media.MethodsWe developed a standardized questionnaire comprising sections on information needs, communication behavior and usage of social media with respect to cancer and combined this with a validated instrument on eHealth literacy for patients. This questionnaire was provided online and with the help of bloggers and leaders of social media groups, distributed in their networks.ResultsThe Internet was the most important information source (n=308; 77.4%). Yet, most of the participants wanted to get information from their doctor (n=342; 85.9%). With respect to trust in a source of information, oncologists were named most often (n=285; 71.6%). On the one hand, many participants got in contact with others, especially peers, via social media (n=319; 80.3%) with a growing bond to their family members on the other hand (n=324; 81.6%). The cancer diagnosis was an impulse for starting with active participation in social media for some participants (n=196; 49.2%).ConclusionsWith social media gaining importance as source of information for patients, improving the quality of information in these networks is an important task in health care systems.