Social media in health – what are the safety concerns for health consumers? Annie Y.S. Lau, Elia Gabarron, Luis Fernandez-Luque and Manuel ArmayonesAbstract
Recent literature has discussed the unintended consequences of clinical information technologies (IT) on patient
safety, yet there has been little discussion about the safety concerns in the area of consumerhealthIT. This paper
presents a range of safety concerns for consumers in social media, with a case study on YouTube. We conducted a
scan of abstracts on ‘quality criteria’ related to YouTube. Five areas regarding the safety of YouTube for consumers
were identifi ed: (a) harmful health material targeted at consumers (such as inappropriate marketing of tobacco
or direct-to-consumer drug advertising); (b) public display of unhealthy behaviour (such as people displaying
self-injury behaviours or hurting others); (c) tainted public health messages (i.e. the rise of negative voices against
public health messages); (d) psychological impact from accessing inappropriate, offensive or biased social media
content; and (e) using social media to distort policy and research funding agendas. The examples presented
should contribute to a better understanding about how to promote a safe consumption and production of social
media for consumers, and an evidence-based approach to designing social media interventions for health. The
potential harm associated with the use of unsafe social media content on the Internet is a major concern. More
empirical and theoretical studies are needed to examine how social media infl uences consumer health decisions,
behaviours and outcomes, and devise ways to deter the dissemination of harmful infl uences in social media. Keywords (MeSH): Public Access to Information; Social Media; Safety; Consumer Health Information; Misinformation; Internet Introduction
456 abstracts. Among these were numerous examples of
Health information technology (IT) is becoming
safety concerns on the popular video sharing platform
increasingly important in patient care and consumer
YouTube. We have grouped them into five areas:
decision-making (Hordern et al. 2011). Recent literature has analysed the unintended consequences of clinical IT
Harmful health material targeted at consumers
on patient safety (Black et al. 2011; Institute of Medicine
Pro-tobacco videos hold a significant presence on
[IOM] 2011; Coiera, Aarts & Kulikowski 2012), but so far
YouTube, and consist primarily of indirect marketing
there has been little discussion about the safety concerns
activity conducted by tobacco companies or their proxies
in the area of consumer healthIT. The last five years
(Elkin, Thomson & Wilson 2010). Although authorities
have seen social computing sites like Facebook, YouTube
worldwide have joined forces to prohibit tobacco
and Twitter gain unprecedented community acceptance,
advertising, a review of 163 YouTube videos containing
and many similar commercial sites for health are now in
cigarette brands found that 71.2% of these videos had
operation. However, little is known about the impact of
pro-tobacco content (Elkin, Thomson & Wilson 2010). A
social media on consumer health decisions, behaviours
positive portrayal of smoking is predominant on YouTube
and outcomes, or the quality and safety of these sites.
(Forsyth & Malone 2010), and tobacco is often presented
Social media (e.g. videos, games, blogs, mobile
along with themes of interest that are popular among
applications, and social networking sites) may overcome
young people, such as celebrities, movies, sports and
many of the reading and writing barriers people experi-
music (Elkin, Thomson & Wilson 2010). In particular,
ence due to limitations in their health literacy. However,
smoking fetish videos are prevalent and easily accessed
consumers are likely to experience harmful effects when
by adolescents (Kim, Paek & Lynn 2010).
accessing social media that is unsafe, especially when the
Another example of inappropriate activity targeted
content is salient. This paper presents a range of safety
at consumers in the social media world is the marketing
concerns that health consumers are already experiencing
of drugs. While direct-to-consumer pharmaceutical
in the social media world, with a case study presented on
marketing is only legal in the US and New Zealand
(Liang & Mackey 2011), all of the top 10 top global pharmaceutical corporations and some illegal online
A case study of safety concerns on
drug sellers have presence in the social media world,
such as Facebook, Twitter/Friendster, sponsored blogs,
A recent scan of abstracts on ‘quality criteria’ related to
and really simple syndication (RSS) (Liang & Mackey
YouTube conducted in November 2011 across PubMed,
2011). They use these outlets to market themselves and
ISI Web of Knowledge, PsychINFO and Scopus returned
their top-selling drugs. Furthermore, illicit online sellers
HEALTH INFORMATION MANAGEMENT JOURNAL Vol 41 No 2 2012 ISSN 1833-3583 (PRINT) ISSN 1833-3575 (ONLINE)
of drugs, herbs, roots, mushrooms, and leaves are active
recent publication on the content analysis of videos on
in the social media world, where substances with highly
the Human Papilloma virus (HPV) vaccine, which found
potent qualities and those that may become lethal can be
that the majority of videos were expressed in a negative
tone, disapproving of the HPV vaccine (Briones et al.
These are just two examples illustrating the presence
2011), and that most of these opposing videos were
of organisations pursuing commercially motivated objec-
consumer-generated content or news clips (Briones et al.
tives using social media. It is foreseeable that many other
2011). This phenomenon is also apparent across different
products and services will utilise social media and online
languages, where another study involving a content
social networks in a similar manner to target consumers
analysis of 74 websites in Italian and 114 in English
and influence their purchasing beliefs without adequate
found that 16.2% and 6.0% of the websites, respectively,
were opposed to the HPV vaccine (Tozzi et al. 2010).
It is interesting that the first review paper on this
Public display of unhealthy behaviours
subject, conducted in 2008, found that most of the
Other harmful and pernicious images can be seen on
videos on the HPV vaccination were positive (Ache
social video platforms, such as people displaying self-
& Wallace 2008). It appears that the negative user
injury behaviours, hurting others, or taking drugs
comments and posts about the HPV vaccine emerged
voluntarily. Over the last decade, the presence of non-
after a period of time. Health authorities considering the
suicidal self-injury on the Internet has grown considerably
use of social media to promote public health messages
(Whitlock, Lader & Conterio 2007), especially among
need to consider carefully the balance between engaging
young people, with recent research suggesting that
their target audience, and moderating comments on
adolescents are avid consumers of these videos (Duggan
promotional material. Unsolicited comments, even from a
et al. 2011). Lewis and colleagues analysed the top 100
small number of individuals, can have detrimental effects
YouTube videos on ‘self-injury’ and ‘self-harm’ and found
on the effectiveness of public health campaigns, which
that these videos were viewed over two million times.
are often expensive to run and costly to repair.
Viewers rated this explicit, self-harm imagery positively, and many of these videos had been selected as favourites
Psychological impact from accessing
over 12,000 times (Lewis et al. 2011). inappropriate social media content
Another dangerous behaviour, conducted for a few
Accessing social media content that is salient, with no
seconds to achieve the state of euphoria, is the ‘choking
warnings about disturbing or offensive material, can
game’. In this ’game’ individuals strangle themselves,
cause unintended psychological impact on its viewers,
either alone or in a group. Obviously this ‘game’ can
especially when accessed by minors without adult
cause immediate death or lead to irreparable damage of
supervision. An example of this was published in The
the brain or other vital organs through lack of oxygen.
Lancet, where a six-year old boy about to undergo surgery
Despite the risks, millions of young people watch these
viewed the full surgical procedure on YouTube without
videos on YouTube, normalising this behaviour and
editing or warning, with the result that his parents
potentially promoting self-harm behaviours among
cancelled the operation the following day (Maskell, Cross
themselves and others (Linkletter, Gordon & Dooley
Other examples of inappropriate social media
In addition to these unhealthy behaviours, there are
content include treatment options on prostate cancer,
countless YouTube videos showing people using drugs:
such as prostate-specific antigen testing, radiotherapy
injecting themselves with heroin, sniffing cocaine or glue,
and surgery. A recent review of YouTube videos on
and using other emerging drugs such as salvia divinorum
prostate cancer found that YouTube is an inadequate
source of prostate cancer information for patients. At the time of writing, the authors concluded that healthcare
Tainted public health messages
professionals should not recommend YouTube to their
Another phenomenon is that social media have become
patients to learn about their condition and treatment
outlets for organisations, news sources, and consumers
options on prostate cancer (Steinberg et al. 2010).
alike for channelling and expressing their opinions
In addition, YouTube contains many examples that
and points of view on controversial topics (Briones et
stigmatise patient illnesses or symptoms, such as epilepsy
al. 2011). In the health domain, this often consists of
(Lo, Esser & Gordon 2010) and obesity (Hussin, Frazier
trashing public health messages, thereby reducing the
& Thomson 2011; Yoo & Kim 2012), causing unnecessary
effectiveness of major public health campaigns.
psychological pain to its sufferers and spreading
Researchers have interpreted these opposition
movements using Conspiracy Theory and Civil Liberties
Overall, health professionals need to be aware that
(Briones et al. 2011), concluding that social media
patients access social media sites for information about
outlets such as YouTube have the potential to significantly
their health, and most of these sites are not regulated
shift public attitudes and beliefs about a controversial
(O’Keeffe et al. 2011). Clinicians need to anticipate the
topic in a short period of time. This was illustrated in a
psychological impact and misconceptions patients may
HEALTH INFORMATION MANAGEMENT JOURNAL Vol 41 No 2 2012 ISSN 1833-3583 (PRINT) ISSN 1833-3575 (ONLINE)
already have about their condition, prognosis, treatment
Communications and Media Authority (ACMA) (ACMA
plans, and procedures due to accessing inappropriate and
2012). This program is designed to meet the needs of
incorrect content online. This is especially important with
children, young people, parents, teachers and library
younger patients (Maskell, Cross & Gluckman 2010).
staff, to address cyber safety issues such as e-bullying. However, the initiative is not dedicated to health
Social media and public policy distortions
concerns nor designed for health consumers. Another
In 2008, researchers in Italy found a correlation between
example is the joint initiative of the Australian and New
a venous insufficiency and Multiple Sclerosis (MS), where
Zealand Medical Associations (AMA and NZMA) and
an abnormality called ‘Chronic Cerebro-Spinal Venous
the Australian Medical Students’ Association (AMSA).
Insufficiency’ (CCSVI) was described as the possible cause
Together they produced a guide on social media for the
of MS (Zamboni et al. 2009). These so-called ‘ground-
medical profession, which presents case studies and
breaking’ findings immediately attracted the attention
advice on ways for medical practitioners and medical
of the mass media as this could have meant the first
students to maintain online professionalism in the social
step towards the ‘cure’ of MS with simple endovascular
media world (AMSA 2010). However, no guidelines
treatment in the jugular. However, these results have been
were provided on how to safeguard consumers from
seriously disputed as the evidence does not support such
experiencing harm in the social media world.
treatments outside clinical research settings.
However, there is a community of people affected by
Centers for Disease Control and Prevention (CDC)
MS who are major supporters of the CCSVI liberation
In the US, a major public health agency, the CDC, is
theory (where liberation refers to the insertion of a stent
actively engaging the use of social media to educate and
in the jugular vein to ‘cure’ MS). These communities are
communicate with its targeted health consumer audience.
active in the social media world (YouTube, Facebook,
The CDC has recently published social media guidelines
blogs), advocating a surgical treatment that has not
outlining ways of engaging consumers in different outlets
yet been proven effective. Videos with recoveries post-
such as YouTube, blogs and Facebook (CDC 2012). These
surgery became popular on YouTube. This movement
guidelines are based on their experience to ‘reach target
was particularly active in Canada, where social media
audiences with strategic, effective and user-centric health
lobby groups managed to influence and modify national
interventions’. For example, the CDC reported their
research agendas in MS, pushing for more research
experience of hosting public health promotion material
funding into CCSVI in detriment to other more evidence-
on YouTube, which they found was more effective in
based research (Chafe et al. 2011). In addition, Chafe
attracting visitors than hosting it on their website (CDC
et al. alerted the scientific community that research
agendas can be manipulated by online communities, and
Social media is not just about designing and
that researchers need to consider spending more effort
publishing content; it is also crucial to consider the way
communicating evidence-based science to the public, such
content is disseminated because it has the potential to
as using social media outlets. Overall, this case high-
‘become viral’ in the online community. The CDC once
lights the problems faced by researchers when significant
experienced a significant viral impact with its citizen
research funding decisions are influenced by movements
outreach blog, where its servers collapsed as a result of
in social media without adequate support of scientific
the volume of visitor traffic. The blog described ways
of preparing for a Zombie invasion, with lessons at the
Social Media has also been used to facilitate commu-
end teaching citizens about catastrophe preparedness
nication between healthcare professionals and policy
(CDC 2011b). Although officials have not yet evaluated
makers. In Taiwan, Syed-Abdul et al. reported a case
the impact of these viral campaigns, the CDC has
where a Facebook group was created to protest about
published guidelines on how to address risks in these
the inadequate staffing situation of medical doctors in
viral situations and offered advice to mitigate them (CDC
emergency departments. Remarkably, the ministry of
2009). For example, how to address open comments (e.g.
health joined the Facebook group and interacted with
defamatory remarks), which may be disseminated; and
the doctors as part of his effort to reform the staffing
how to identify malicious ‘friends’ who want to extract
situation in the healthcare system (Abdul et al. 2011).
private information from other users (i.e. trolls). Discussion US Food and Drug Administration (FDA) The open nature of social media also presents limitless Can we learn from regulatory bodies on ways to
opportunities for stakeholders to misusethe online
use social media in a safe and effective manner?
community to promote their products and services.
In Australia, there are limited policies to guide
In 2007, the Wikipedia community identified a
and regulate the safety of health consumers in the
pharmaceutical company that was editing articles
social media world. One example is the Cybersmart
on Wikipedia and deleting side effects of certain
program, which is a national cyber safety and cyber
medications (Friday 2007). Evidence is also emerging
security education program managed by the Australian
that pharmaceutical companies are sponsoring e-patients
HEALTH INFORMATION MANAGEMENT JOURNAL Vol 41 No 2 2012 ISSN 1833-3583 (PRINT) ISSN 1833-3575 (ONLINE)
to blog about their diseases, which involves writing about
when they disseminate content. Encouraging producers
certain classes of pharmacologic treatments and devices
to place warnings to advise users of potentially offensive
in their blog entries without disclosing their conflict of
material should become norms of practice to deter the
financial interest (Sparling 2011). In response, the FDA
spread of undue harmful effects. In addition, authorities
has established guidelines on the marketing of medical
should consider developing versions of standardised
products using social media (FDA 2011a).
media product rating systems for laypersons to classify
Policy makers face additional challenges with social
and rate social media videos, such as the Australian
media. Mobile applications are emerging and being
Classification Board (ACB 2012), and the Motion Picture
promoted as diagnostic tools and critical data collection
Association of America (MPAA) film rating system (MPAA
instruments for clinicians and patients. However, the
2012). Like other areas in public health, preventing access
efficacy and safety of these mobile applications have
and production of unhealthy material is likely to be a
not been properly verified through rigorous testing.
more cost-effective approach than providing treatment to
In response the FDA has recently released a guideline
those who have already accessed unhealthy content.
outlining the classes of mobile medical applications requiring approval by the FDA in clinical trials before
Can we learn from the Institute of Medicine
being made available to users in the market (FDA 2011b).
to develop a scientifi c approach in designing
These include: (a) mobile applications that are used as
and monitoring the safety of social media
an accessory to a regulated medical device (e.g. viewing
interventions for health?
medical images on a mobile platform and performing
When designing and developing e-health interventions
an analysis or process for diagnosis); and (b) mobile
intended for public consumption, one assumption is
application that transforms a mobile platform into a
often overlooked: consumers may not have the skills or
regulated medical device (such as connecting the mobile
resources to use these interventions (Norman and Skinner
platform to vital sign monitors, bedside monitors, cardiac
2006). Many social media websites are not designed
monitors, or other similar devices) (FDA 2011a).
for people with disabilities (e.g. cognitive impairment, visual problems), preventing parts of the population from
Can we improve consumers’ skills, motivations
benefitting from these interventions. Privacy is also an
and attitudes to make their consumption and
issue since many online platforms change their privacy
production of social media material safer?
policies on a regular basis and users can end up with
The examples presented so far have focused on estab-
problems when attempting to delete private information
lishing regulatory frameworks, monitoring standards
that they published unintentionally. For example,
compliance, regulating software quality, and improving
Fernandez-Luque et al. found that many comments
communication flows from public authorities (Coiera,
on YouTube health videos contained private health
Aarts & Kulikowski 2012). Yet, consumers remain
information, and in a number of cases, these comments
untapped sources who are likely to have a more signifi-
remained after users had deleted their accounts
cant role in detecting potential mistakes, harm, and
(Fernandez-Luque, Elahi & Grajales 2009).
problems related to health software and misuses of social
The recent IOM report outlines 10 recommendations
relating to the design, implementation, usability, and safe
e-Health literacy refers to the ‘ability of individuals to
use of health IT for all users, including patients (IOM
seek, find, understand, and appraise health information
2011). Its recommendations call for cross-disciplinary
from electronic resources and apply such knowledge to
research towards the design and use of health IT, with a
addressing or solving a health problem’ (Norman & Skinner
focus on: (a) user-centred design and human factors; (b)
2006; Stellefson et al. 2011). Although social media (such
socio-technical systems approach; (c) post-deployment
as videos, games, mobile applications) may break down
safety testing; and (d) policies to govern the use of health
many of the traditional reading and writing barriers in
IT. Although there is little reference to the safety of social
health literacy, navigating safely in the social media world
media, these principles are relevant when designing
requires a new set of e-health literacy skills. In practical
and developing social media interventions for health
terms, not only should consumers be informed of social
media channels that are credible for health purposes,
The IOM also endorses the need for vendors and
they should also be aware of their responsibilities to (a)
users to report health IT related deaths, serious injuries,
avoid potentially harmful material, (b) report incidents of
or unsafe conditions (IOM 2011). This is reminiscent
discerning content, (c) consider the consequences before
of an incident-reporting system initiated by Eysenbach
commenting and disseminating harmful and disrespectful
and his team about a decade ago. Named the ‘Database
content, (d) be cautious of commercially motivated
of Adverse Events Related to the Internet’ (DAERI), its
objectives, and (e) be aware of undue social influences
objective was to solicit cases submitted by healthcare
from other users in the online community.
providers and patients, and collect reports in lay
When producing content, consumers need to be
publications to understand adverse events on the Internet
aware of their (a) obligation to be responsible content
(Eysenbach & Köhler 2002; Köhler & Eysenbach 2002).
producers, and (b) consider the broader consequences
Although the project is no longer active, the examples
HEALTH INFORMATION MANAGEMENT JOURNAL Vol 41 No 2 2012 ISSN 1833-3583 (PRINT) ISSN 1833-3575 (ONLINE)
collected are still relevant today, and are likely to be
study; the collection, management, analysis, and interpre-
exacerbated in the social media world. These examples
tation of the data; or the preparation, review, or approval
include misdiagnosis or wrong treatments due to online
prescription of drugs or medical consulting via the Internet, and discontinuation of life-saving treatments
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HEALTH INFORMATION MANAGEMENT JOURNAL Vol 41 No 2 2012 ISSN 1833-3583 (PRINT) ISSN 1833-3575 (ONLINE)
Effects of Olanzapine, Quetiapine, and Risperidone on Neurocognitive Function in Early Psychosis: A Randomized, Double-Blind 52-Week Comparison Richard S.E. Keefe, Ph.D. Objective: The authors sought to com- Results: At week 12, there was significant John A. Sweeney, Ph.D. treatment (p<0.01), but no significantfunction in patients with early psychosis. overall differenc
Elianne Riska Education: M.A., 1969: Political Science, University of Helsinki, Finland Postgraduate studies, Department of Sociology, University of Copenhagen, Denmark, 1969- 1971. Ph.D. in Sociology, 1974, State University of New York at Stony Brook (Stony Brook University), New York, USA. Occupational history Assistant and Associate Professor, Department of Sociology and College