YouTube as a source of information about retinitis pigmentosa

Abstract

Sir, The internet is an increasingly important health-care resource, providing users with rapid, inexpensive access to medical information. Video streaming websites, such as YouTube, the third most visited website, are the key providers of this information.1, 2 Despite being a major source of health-care information, YouTube is not peer-reviewed and its content is not screened for scientific accuracy prior to being uploaded. The authors sought to categorise videos relating to retinitis pigmentosa on YouTube, both by factual accuracy and by source. The first 10 pages of results generated by searching ‘retinitis pigmentosa' were reviewed (1/6/2012). The sample consisted of 162 videos, which were watched by two independent researchers and categorised as ‘useful', ‘misleading', or ‘no information'. ‘Useful' videos contained scientifically accurate information and/or useful information on social aspects of the illness. ‘Misleading' videos contained scientifically unproven information, such as claims of acupuncture or faith-healing completely restoring vision. ‘No information' videos contained no content relevant to RP. Videos were also classified according to the source; charity, independent user, medical professional, popular media, university, and medical advertisement. We found 82 videos to be misleading; 78 of these were classified as medical advertisements. Only 51 videos provided useful, with scientifically accurate content (Table 1). In total, the videos received over 150 000 views annually. Charities, medical professionals, and universities were the most likely to upload useful videos (Table 2). Videos uploaded by independent users generally focused on the social impact of RP (Table 3). These results differ significantly from previous evaluations of medical content on YouTube, which found that <20% of the videos were misleading.3, 4 These studies employed similar methodology but investigated conditions with established medical treatments. Table 1 Categorisation according to value of content Table 2 Information provided by all videos stratified for source Table 3 Analysis of all useful videos stratified for video source The authors believe the high incidence of misleading videos regarding RP result from the lack of effective medical treatments for the condition. Patients frustrated at the lack of treatment available in the clinic turn to the internet, seeking potential treatments. Unfortunately, YouTube provides an excellent platform for the unregulated advertisement of unproven and often expensive alternative therapies. We therefore recommend that RP patients be directed towards reliable, peer-reviewed information sources and be advised that content on open-access websites is commonly misleading.