START Conference Manager    

ASIST 2012 Annual Meeting 
Baltimore, MD, October 26-30, 2012

Things My Doctor Never Told Me: Bridging Information Gaps in an Online Community
Ellen L. Rubenstein

Tuesday, 1:30pm


In a medical climate where doctors are usually pressed for time, it is common for patients to leave their appointments feeling confused, unable to recall what was discussed, or simply missing information. These communication difficulties result in gaps in patients' knowledge about their conditions and how to proceed. One response to this problem has been that patients join online health communities as a way to access more information and obtain social support. Drawing on on data from 31 semi-structured, in-depth interviews, participant-observation, and online archives analysis, this study examined the health information interactions that participants in an online breast cancer community experienced as they progressed through breast cancer and survivorship. This study sought to understand the specific gaps patients experience, how they fill these gaps through online communication, and how online health information behavior interacts with medical decisions and patient-provider communication. The findings reveal an extensive array of information that does not get communicated during patient-provider interactions, how patients navigate through the information gaps with the help of the community, and the significance of peer interaction in the comprehension of medical information and medical decision-making.