Social media as a source of information for patients with chronic obstructive pulmonary disease

Abstract

The Internet and social media are facts of modern life, allowing patients to access information on almost any topic and providing opportunities to interact and engage with a vast array of people and organisations. Chronic obstructive pulmonary disease (COPD) and the experience of having COPD are both areas where information can potentially be obtained from the Internet and experiences shared. YouTube, a social media site where videos can be viewed, uploaded, rated, commented on and shared is potentially a useful source of medical information, but this depends on the quality and reliability of material uploaded and the extent to which good quality material can be easily identified and accessed. There is evidence that patients with COPD often lack understanding about their condition and have particular problems with certain aspects of management such as the proper use of inhalers. Online videos offer the possibility to view educational material repeatedly and may therefore be a way of supplementing and reinforcing learning about inhaler technique and other self-management issues. In the current edition of the journal, Stellefson et al. describe an analysis of the content of education videos for patients with COPD that they identified through a systematic search on YouTube performed in August 2012. They identified 223 videos and rated them for quality. The majority of videos came from a professional source and videos from a professional source were in general rated by the investigators as being of a higher quality. There was little interaction with the videos – with a median of <5 ‘likes’ ‘favorites’ or ‘dislikes’ per video. Most videos had attracted no comments. These findings suggest that COPD patients may not be habitually engaged with media in this way. The results are a snapshot, but the underrepresentation of COPD on YouTube continues despite its high prevalence and impact. A search I conducted on 18 February 2014 revealed 972,000 results for diabetes compared with only 56,000 for COPD. The most viewed COPD video has by now been viewed more than 524,000 times and received 81 comments, so this is clearly a developing area. For now, some caution is needed. Patients with COPD tend to be older and more socially disadvantaged and this is reflected in access to the Internet and both literacy and health literacy. Data from the UK Office for National Statistics show that whilst 90% of 16–24 year olds have used social media, for 65–74 year olds the figure is only 19%. This means that a too heavy reliance on Internet-based strategies may exclude large groups of patients. Even where accurate, information available may be biased towards certain areas, with a predominance of information about medications and less emphasis on other aspects of care such as pulmonary rehabilitation or smoking cessation. It is important also to note that even where the video itself is of high quality, associated advertising or comments on the video may contain unreliable information that may present a risk to patients, particularly those who are less Internet savvy. So how should health professionals respond? They can advise patients to look for information that comes from a respectable source such as a professional organisation or charity. Many patients will need very clear direction, and it may be that for the time being YouTube will be most useful as a resource for health professionals searching for material to show or recommend to

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