Substitute or support? Examining the role of consumer-centric e-discussion within domains of uncertainty.

While users of web-based information often report their reliance on such information for medical decision making, it has yet to be determined if this is universally true across all types of information or specialty domains. Some have argued that the web may be improperly used as 'substituted clinical judgement', rather than serving as a support tool for patients and their doctors. Further, little attention has been paid to the selective development of methodologies for consumer-centred discussions, or to selective grouping and analysis of debated 'domains of uncertainty' in healthcare. Our objective in this study is to introduce a more refined qualitative model for discussion group or chatroom evaluation than has traditionally been used, and illustrate the application of grounded theory as an inductive framework, using assessment of e-discussion within an area of ongoing medical uncertainty, narcolepsy. Using this approach we find that while consumers often debate and discuss topics traditionally reserved for the doctor-patient relationship, they routinely encourage provider advice and dialogue within such discussions, even after experiencing unsatisfactory outcomes in such settings.