ePatients on YouTube: analysis of four experiences from the patient's perspective

Abstract

Background: Many patients share their personal experiences and opinions using online video platforms. These videos are watched by millions of health consumers and health care professionals. Although it has become a popular phenomenon, little is known about patients who share videos online and why they do so. Objective: We aimed to explore the motivations and challenges faced by patients who share videos about their health and experiences on YouTube. As part of a conference discussion, we asked several patients actively engaged on YouTube to make a video explaining their motivations. This paper discusses these videos. Methods: In this qualitative study, we performed an analysis of the videos created by 4 patients about their self-reported motivations and challenges they face as YouTube users. First, two judges compared the transcriptions and decided the exact wording when confusing content was found. Second, two judges categorized the content of the videos to identify the major themes. Results: Four main categories emerged: (1) the origin or cause for making the first video, (2) the objectives that they achieve by continuing to make videos, (3) the perception of community, and (4) the negative consequences of the experience. Conclusions: The main reason for making videos was to bridge the gap between traditional health information about their diseases and everyday life. The first consequence of sharing their life on YouTube was a loss of privacy. However, they also experienced the positive effects of expressing their feelings, being part of a large community of peers, and helping others to deal with a chronic condition.