Quality of Medical Advice Provided Between Members of a Web-Based Message Board for Patients With Implantable Defibrillators: Mixed-Methods Study

BACKGROUND: Patients use Web-based medical information to understand medical conditions and treatments. A number of efforts have been made to understand the quality of professionally created content; however, none have described the quality of advice being provided between anonymous members of Web-based message boards. OBJECTIVE: The objective of this study was to characterize the quality of medical information provided between members of an anonymous internet message board addressing treatment with an implantable cardioverter-defibrillator (ICD). METHODS: We quantitatively analyzed 2 years of discussions using a mixed inductive-deductive framework, first, for instances in which members provided medical advice and, then, for the quality of the advice. RESULTS: We identified 82 instances of medical advice within 127 discussions. Advice covered 6 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% (41/82) was deemed generally appropriate, 24% (20/82) inappropriate for most patients, 6% (5/82) controversial, and 20% (16/82) without sufficient context. Proportions of quality categories varied between topical areas. We have included representative examples. CONCLUSIONS: The quality of advice shared between anonymous members of a message board regarding ICDs varied considerably according to topical area and the specificity of advice. This report provides a model to describe the quality of the available Web-based patient-generated material.