Perils of user generated epidemiology

I recently worked with some students on a short analysis of Lyme disease content on YouTube.  I thought the results of the work were worth writing up for publication.  The paper will be published in the journal Social Science & Medicine in the fall, and the online manuscript version is available for download until October 29th:

https://authors.elsevier.com/a/1Vhom-CmUdvwH

The findings are pretty intuitive.  There is considerable YouTube content on Lyme disease, but most of it is neither scientific nor focused on infection prevention.  Personal stories and videos about celebrities are popular and are among the most common content available.  Public health agencies and academics produce very little content, and the content they do produce doesn’t receive much viewer interest. This may explain why the public health content that is most available on YouTube is often inconsistent with best practices recommended by experts in the field.

Given the large number of video views on Lyme disease, and the absence of content published by experts, it seems that public health agencies should create more content for YouTube.  This is not simply a scholarly exercise, but a scientific and even moral imperative–many people get information from YouTube and other forms of online user generated media, and need to be provided better information.  To maximize efficacy, these agencies should generate content that combines evidence-based public health information with personal stories about people who have experiences living in a areas where Lyme disease risk is high.