Mostly Unreliable – YouTube and psoriasis

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Mostly Unreliable – YouTube and psoriasis

In the last few decades, the internet has become an unimaginably vast and detailed source of information on every conceivable health problem.  For example, if I simply enter the word “psoriasis” in Google, it gives 92,600,000 results in 0.47 seconds.  Moreover, evidence suggests that around 80% of internet users access health information on line, especially those with chronic illnesses who may rely heavily on internet-based sources. 

In parallel with this, the rise of social media has become increasingly important in the context of health care.  Perhaps the best example is that of YouTube, an open-access video-sharing platform which hosts a huge number of videos offering medical information and advice.  YouTube has around 5 billion visits, with an estimated 1 billion hours watched every day.  At one level, of course, this must a be a good thing.  If people are better informed, they are more able to make educated decisions about their health and medical treatment.  Conversely, inaccurate or misleading information can cause unnecessary worry and distress, especially for those who are already anxious about their health.  In this interesting study – the first of its kind - the authors set out to evaluate the quality of the information provided in YouTube videos on psoriasis1.  

The authors point out that psoriasis is a hot topic in social media with psoriasis foundations and associations being among the most popular dermatology-related organisations on Facebook, Twitter, and LinkedIn.  In addition, previous publications have shown that YouTube is heavily accessed as a source of information on psoriasis.2,3.  However, because most of these videos are privately posted, rather than originating from trustworthy institutions, there is a concern about the scientific quality of the information provided.  Hence the objectives of this study were:

  • To identify and upload the 100 most viewed psoriasis-related videos from YouTube
  • To evaluate the quality of YouTube videos as a source of information on psoriasis
  • To correlate viewers’ ratings with expert quality assessments
  • To point out strategies whereby the quality of video clips and medical content uploaded to YouTube could be improved.

Method

The investigators carried out a search on YouTube on July 27th, 2017.  From this they identified the top 100 videos offering information related to psoriasis, which achieved a total of 73 million views.  Interestingly, the video clip in 100th place achieved only 40,000 views which suggests that videos ranked below the first 100, would have a negligible impact on study outcomes. 

After collecting basis information regarding source, topic, duration etc, the quality of the video clips was then evaluated by a team of experienced dermatologists, using two validated assessment instruments, (1) The Global Quality Scale and (2) the DISCERN tool.  They also classified the videos as useful, misleading or dangerous. 

The main findings

The six key findings from the study were:

  1. Most video clips contained anecdotal personal experiences with complementary and alternative psoriasis treatments, topical treatments, and nutrition and diets being the most frequently addressed topics
  2. While advertisements accounted for 26% (26/100) of the videos, evidence-based health information amounted to only 20% (20/100).
  3. Overall, 32% (32/100) of the videos were classified as useful, 52% (52/100) as misleading, and 11% (11/100) as potentially dangerous.
  4. Almost two-thirds (63%) of the videos spread misleading information and recommendations
  5. According to the results of the GQS and DISCERN tools, only 11% and 12% of the videos, respectively, were of good or excellent quality with unbiased, evidence-based information. 
  6. Viewers rated poor-quality videos better than higher quality videos.

Discussion

Psoriasis patients are avid users of social media, including YouTube, as a source of information on their disease.  For this reason, that fact that nearly two-thirds of the psoriasis-related videos analysed in this study, disseminate misleading or even dangerous content is clearly worrying.  Subjective, anecdotal and unscientific content is clearly over-represented. 

What is equally concerning is the observation that poor-quality video clips consistently receive more positive quality ratings than higher quality videos.  In other words, viewers have a limited capacity to distinguish between scientifically based evidence, as opposed to the anecdotal and purely subjective.  The authors speculate as to why this might be the case.

At least one factor is that most individuals searching the internet for medical information, exhibit “confirmation bias” – i.e. they are more likely to believe what they read or see, when the information presented matches what they already believe or know.  Another factor may be that “personal” accounts of illness may feel more rooted in actual experience, than the rather sterile accounts provided by more scientifically credible sources. 

The investigators also speculate on what might be done to improve the quality of information disseminated through YouTube.  Clearly, closer cooperation between social media, dermatology associations and psoriasis self-help organizations, would facilitate the availability of medically accurate information about psoriasis.  Ideally, websites and video clips with medical content, would be subject to standardized quality control or minimum standards through government regulations.  As the authors point out, however, given the sheer amount of information being posted online every day, this is simply not feasible. 

Conclusion

This was a well-executed and in-depth study that exposed worrying features about the quality of psoriasis-related YouTube video clips.  Almost two-thirds of the videos evaluated were judged to be either misleading or potentially dangerous.  Subjective and anecdotal content was clearly disproportionately overrepresented and poor-quality videos were given consistently higher ratings by viewers than the better-quality videos.  There is an urgent need for professional dermatological organizations to engage with social media platforms, especially YouTube, to improve the quality of online psoriasis-related information. 

Dr David Ashton MD PhD

Scientific References                                                                                         

  1. Mueller SM,  Jungo P, Cajacob L, et al.   The Absence of Evidence is Evidence of Non-Sense: Cross-Sectional Study on the Quality of Psoriasis-Related Videos on YouTube and Their Reception by Health SeekersJ Med Internet Res 2019;21(1): e11935
  2. Lenczowski E, Dahiya M. Psoriasis and the digital landscape: YouTube as an information source for patients and medical professionals. J Clin Aesthet Dermatol 2018;11(3):36-38
  3. Qi J, Trang T, Doong J, Kang S, Chien AL. Misinformation is prevalent in psoriasis-related YouTube videos. Dermatol Online J 2016;22(11):1.