title: An analysis of personal medical information disclosed in YouTube videos created by patients with multiple sclerosis.
abstract: The Internet has become one of the main sources of health information. Today, content generation is no longer limited to the healthcare professionals of the late nineties; Web 2.0 services and platforms have empowered patients to create and interact with various forms of Patient-Generated Content (PGC); these include: videos, blogs, and social networking pages, among others. This investigation evaluated the characteristics of PGC found within YouTube video comments. We selected a random sample of 25 out of 769 Multiple Sclerosis patient-generated videos and analyzed their corresponding 557 comments for health information. 320 comments met the inclusion criteria and 70 contained personal health information (PHI). Comments with PHI were sub-characterized for the type of medical information (i.e., diagnosis, date of diagnosis, medication, among others). In this descriptive study, we present the strata within this content and postulate some of the corresponding patient risks and ethical challenges associated with PGC found in YouTube video comments.
authors.affiliation: Northern Research Institute (Norut), 9292 Tromsø, Norway. luis.luque@norut.no
authors.forename: Luis
authors.initials: L
authors.lastname: Fernandez-Luque
authors.forename: Najeed
authors.initials: N
authors.lastname: Elahi
authors.forename: Francisco J
authors.initials: FJ
authors.lastname: Grajales
mesh_terms: D006801:Humans; D020407:Internet; D009103:Multiple Sclerosis / Q000188:drug therapy*; D014342:Truth Disclosure