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YouTube and Truvada: Viewer Responses to Videos about Pre-Exposure
Prophylaxis for HIV
Margaret L. McLaughlin, Chih-Wei Hu, Mina Park, Jinghui Hou, and Jingbo Meng
<mmclaugh@usc.edu>, <vestamomo@gmail.com>, <minapark@usc.edu>, <joavinhou@gmail.com>,
<jingbomeng@gmail.com>
Annenberg School for Communication and Journalism, University of Southern California
Pre-exposure prophylaxis (PrEP) for HIV prevention is a promising experimental approach
currently being evaluated globally. Truvada is antiretroviral PrEP which has recently been
approved by the FDA to prevent HIV infection in high-risk populations (e.g. sex workers,
individuals with HIV+ partners).The Centers for Disease Control and Prevention has released a
final set of guidelines which provide physicians and the public with information about the
indications for and efficacy of the drug, including issues related to adherence and long-term
safety. Among the concerns that have been raised about Truvada are so-called “risk
compensation,” the worry that individuals on Truvada will no longer use condoms/practice safe
sex; that adherence will be poor and use intermittent, leading to the prospect of failure of viral
suppression and development of drug-resistant viruses; that individual pre-testing for HIV is
obligatory before beginning a course of Truvada; and that Truvada will be regarded as a club
drug and/or sold on the black market as a “morning-after” pill, which it is not. Such concerns can
be addressed in part by identifying public sources of misunderstanding about the drug and its
appropriate uses and developing suitable strategies to deal with them.
The study reported here focuses on the dissemination of information about Truvada on one of
the most popular of the social media, YouTube. We were interested in learning what the
characteristics were of responses to Truvada-related videos, focusing on thematic content and
affective tone. As the most popular online video sharing community, YouTube has over 800
million users visiting each month (YouTube, n.d.). The viral communication of information and
expression of concerns and opinions regarding Truvada on YouTube make it an obvious venue
to observe and monitor public sentiment.
Research findings about viewer responses to health-related content on YouTube are just
starting to accumulate. With a few exceptions (e.g., the study by Tian (2012) on organ donation
videos), most reports on a diverse array of health issue representations on the videosharing
site, ranging from non-suicidal self-jury to smokeless tobacco use, have found that significant
numbers of YouTube videos promote normalization or glamorization of unhealthy behaviors
(Elkin, Thomas, & Wilkin, 2012; Lewis, Health, Sronberger, & Arbuthnott, 2012; Seidenberg,
Rodgers, Rees, & Connolly, 2012), stigmatize, ridicule and attribute to individual behavior health
conditions like obesity that may have genetic and environmental origins (You & Kim, 2012),
invoke conspiracy theories and concerns over civil liberties to discredit public health initiatives
(Briones, Nan, Madden, & Waks, 2012), and fail to address recovery from or cessation of
unhealthy behaviors (Lewis et al., 2012). Fewer studies have looked at comments on YouTube
videos. Briones, Nan, Madden, and Waks (2012) found that videos about the HPV vaccine with
a negative tone received more “likes” from viewers. Yoo and Kim (2012) found that teasing
videos about obesity, showing overweight individuals eating heartily or being physically clumsy,
had more viewings, garnered higher ratings, and were commented on more often than videos
without weight-based teasing. In a study pointing to the effect of viewer comments, Walther,
DeAndrea, Kim, and Anthony (2010) found that that valence of others’ comments on PSAs
directionally affected how they were evaluated by YouTube viewers. Tian found that about 36%
of the comments about organ donation videos were simply irrelevant to the topics addressed in
the videos. Analyzing user commentary about Truvada on this influential social medium will
provide us with information about public perceptions and concerns, and provide a basis for
implementing strategies to address misunderstanding, mistrust, and misinformation. Based on
our concurrent analysis of similar discourse on Twitter, looking at Tweets and their linked
content, we anticipated that user comments on YouTube would focus on the issues of risk
compensation.
Method
Data were obtained with tools built into DiscoverText, a cloud-based text analytic solution which
enables researchers to scrape public posts from social media. For the study reported here, we
collected comments on Truvada-related videos. The posts needed to meet the following criteria:
first, they must be public posts on YouTube, and second, the videos to which they pertained
must be retrievable by the keywords “Truvada” or keyword pairs “HIV PrEP,” “HIV prevention”,
or “pre-exposure prophylaxis.” Third, video content was required to be about the prophylactic
use of Truvada, rather than as treatment for diagnosed HIV. Fourth, the language of the video
and related comments must be either English or Spanish. Fifth, videos must have been
published between July 16, 2012, when Truvada was approved by the FDA as pre-exposure
prophylaxis, and January 1, 2013. Finally, there must be at least one comment. A total of 107
videos about Truvada were located, and 19 videos met the criteria. (Some videos that would
otherwise have been eligible had disabled commenting.) Among the 19 videos, 12 were in
English and 7 were Spanish. Videos were produced by a cross-section of sources, including
user-generated content as well as clips from mainstream media news shows and academic
sources. There were 134 comments on the videos, but only the 121 comments written in
English were included in the content analysis reported here. We are currently in the process of
translating and coding the Spanish language material as well as retrieving additional videos that
have come online in Spring 2013.
The data automatically collected by DiscoverText included video title, video duration, rating of
the video, number of viewers, publication date, and all user comments Other elements, such as
affective tone and thematic content of the comments, were manually coded for the following
content categories: Truvada adherence, side effects, alternative medications and supplements,
behavior change due to product use (risk compensation), efficacy, pre-testing, development of
drug resistant viruses, appropriate recipients, vaccine research, societal cost, insurance issues,
support services, club or party drug, moral judgments, distrust of government, distrust of big
pharmaceutical companies, and correcting misinformation
Results
Among all 121 comments written in English, “off-topic” comments constituted the largest
category (27.6%, n= 34), consistent with the findings of Tian (2012) on organ donation
Comments about “side-effects of Truvada” were found to be the second most frequently
mentioned content category, accounting for 19.5 percent of the total comments. Comments
about “mistrust of government” ranked third
among all content categories, contributing 13
percent of the total comments. Comments about “mistrust of the pharmaceutical industry” and
“correcting misinformation” both ranked fourth among all content categories, accounting for 8.1
percent of the total comments respectively. Contrary to our expectation, discussion about risk
compensation (Truvada as a condom alternative and black market/party drug) were not shown
to be prevalent themes across videos, accounting for only 4.1% of the total comments. In
addition, we found that 61.2% of the comments had a neutral affective tone, whereas there were
31.4% comments with a negative tone. Comments with a positive affective tone constituted only
7.4% of the total. There was little discussion about the efficacy of the drug, its costs, the need
for pre-testing, or the consequences of irregular adherence
Conclusion
As has often been observed to be the case with YouTube, comments tend to be off-topic and
the commenting space is often used as a forum for irrelevant and puerile humor, verbal jousting,
and venting of various kinds. Little if any serious discussion of the efficacy of Truvada, the
science behind it, the concerns that its availability would usher in the decline of safe sex
practices, or other issues of concern to HIV researchers and health care professionals emerged
in the discourse. In addition, “mistrust of government” and “mistrust of the pharmaceutical
industry” were among the most frequently mentioned themes across videos. The results not
only reflect people’s prevailing concerns about Truvada, but also reveal a long-held controversy
over the issue of the “legitimacy of science” in that some people do not believe in the existence
of HIV/AIDS and regard any treatment for AIDS as a conspiracy of the government, science and
the pharmaceutical industry. That the number of comments with a negative tone was four times
that of comments with a positive tone suggests that Truvada, to the extent that it is known as a
potential approach to HIV prevention, is regarded with a certain degree of wariness.
Development of strategies to address these sources of public skepticism through effective video
content is an obvious next step. Targeted commenting by health professionals (a form of
“astroturfing” for the public good) can help to create a less negative tone and increase
understanding.
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