Background: As therapeutic interventions across medicine increase in complexity, most patients use the internet to research health issues to inform decisions, including whether or not to accept certain tests, medications, or devices. Online information is available any time and can be reviewed indefinitely by patients, filling some educational needs outside of appointments with care providers. The quality of information patients encounter online varies, and we found no models for examining anonymously-created medical advice in extant literature. We used implanted defibrillator (ICD) treatment, characterized by patient educational and supportive needs across the trajectory of care, as a model. We sought to characterize the quality of medical information provided between commenters on a typical patient-facing internet message board discussing ICDs.
Methods: Two years’ of discussions appearing on a dedicated message board for ICD patients were qualitatively analyzed using a mixed-deductive framework. Discussions were first analyzed for instances in which members provided medical advice. This advice was then characterized for 1) topical area and 2) quality.
Results: We identified 82 instances of medical advice within 127 discussions. Advice covered six topical areas: 1) Device Information, 2) Programming, 3) Cardiovascular Disease, 4) Lead Management, 5) Activity Restriction, and 6) Management of Other Conditions. Across all advice, 50.0% was deemed Generally Appropriate, 24.4% Inappropriate for Most Patients, 6.1% Controversial, and 19.5% Without Sufficient Context. Proportions of quality categories varied between topical areas. Representative examples of advice provided between members will be included.
Conclusions: Patients use online medical information to understand conditions and treatment options. A number of efforts have been made to understand the quality of professionally-created educational content, while ours describes the quality of advice being provided between anonymous members of an online message board. The quality of advice varied considerably, both by topical area and the specificity of advice. This analysis provides a methodologic model by which to describe the quality of patient-generated material available online.