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110429 himj 41-2.indd

Social media in health – what are the safety concerns
for health consumers?

Annie Y.S. Lau, Elia Gabarron, Luis Fernandez-Luque and Manuel Armayones Abstract
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 consumer health IT. 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;

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 health IT. 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).
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 misuse the 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 References
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