Part of my Social Media and Public Health series. For references, please see this post.
It’s easy to gaze wide-eyed in wonder, as a fellow Facebooker consumes the advice of a stranger, accepting this unsubstantiated suggestion as the solution they’ve been longing for. This will be the panacea for their weird rash on their foot or a lump in their arm.
But the truth is, that the ability seek and exchange health information over online social media, is as amazing as it is terrifying. Here are just some of the disadvantages and advantages of people engaging with health issues through social media, from the perspective of the provider and the patient.
1. Engaging in health information over social media improves access to health information.
Social media is well positioned to improve access to health information, in spite of geographic barriers (Bhutta, 2012; Sadler et al., 2010). Social media content is curated by the horizontal movement of information, or the exchange of information between peers (Newby et al., 2015). The reach of a social media post is largely based upon existing relationships and how users interact with that information. The more a user engages with a specific piece of information, the more likely it is that that information will be viewed by others in their social network. Engagement includes clicks, likes, shares and comments. Social media content with more likes has a greater reach, improving the overall accessibility of the information at hand. When information is more accessible, patients are better able to seek and consume that information and are more confident making informed decisions about their health care (Korda & Itani, 2013). While peer-driven information of this type creates opportunities for patients and providers alike, it also enables the spread of misinformation, posing some disadvantages to both parties.
Social media does not discriminate information by quality of content. As a result, health information found through social media often lacks quality and reliability (e.g. Banki et al., 2016; Sobota & Ozakinci, 2015; Ventola, 2014). Unchecked misinformation may travel quickly over social media, leaving users with the responsibility to verify sources (Craigie et al., 2002). But users may be disinclined to verify information from a trusted source, including a friend or loved one (cite). So when Aunt Sally posts something about ovarian cancer over social media, her niece is not only more likely to see it because someone in her social network posted it, but she is also more likely to trust that information. As a result, anecdotal stories and personal experiences shared over social media may be treated as fact, feeding misinformation, and posing challenges to patients and providers alike.
Several studies have sought to understand how misinformation over social media impacts patients and providers. To date, relatively few studies have found evidence of measurable harm (Noilke et al., 2015; Syed-Abdul et al., 2013; Singh et al., 2012; Crocco, 2002), with research speaking favorably of the public’s ability to discern the quality of online information (Cole et al., 2016). A 2016 study reported that poor quality health information is unlikely to lead to inappropriate action (Cole et al., 2016). Misinformation over social media may not pose a significant threat to the individual, but there is still worry that it may negatively impact health communication efforts. For example, social media provides opponents of certain health services, like vaccines, a new mechanism to organize opposition and extend the reach of their message (Bean, 2011; Larson et al., 2011; Cooper et al., 2008). With the help of Facebook and Twitter, anti-vaccination groups are able to connect directly with individuals seeking information about vaccines online, using their vantage point to evoke concerns and continue the spread of misinformation through posts, and memes like the one on page 14 (Mitra et al., 2016). In the case of vaccines, misinformation over social media may lower rates of vaccine compliance and contribute to the resurgence of vaccine-preventable conditions, an outcome that does pose a disadvantage to providers and patients (Mast et al., 2015).
Another example of how misinformation over social media may pose a disadvantage to providers and patients can be found in the 2014 Ebola outbreak. When the first case of Ebola was diagnosed in the US in September, mentions of Ebola over Twitter went from about 100 per minute to over 6000 (Luckerson, 2014). While public awareness of this type isn’t inherently a bad thing, many of these tweets unintentionally spread misinformation, posting news about outbreaks in US cities that hadn’t occurred and incorrectly warning users about how Ebola is spread (Luckerson, 2014). The movement of misinformation made evidence-based health communication difficult for healthcare providers and increased anxieties among the public.
2. Social media improves access to peer support.
Support groups, for individuals coping with a new diagnosis or a chronic condition, enable patients to connect with their peers and benefit from these interactions (Setoyama et al., 2011; Høybye et al., 2005; Klemm et al., 2003). Disease-specific support groups empower individuals to participate in health decision making, increasing acceptance, optimism, confidence, and an overall sense of well-being (Chen, 2011; van Uden-Krann et al., 2009). But not everyone can participate in an in-person support group, with various geographic and socio-economic barriers restricting equitable access. Individuals with health problems or limited mobility, may find it difficult to connect with people offline (Wright, 2016; Braithwaite et al., 1999). This is where social media comes into play. Over social media, users can log in anytime they have an internet connection, overcoming geographic isolation and other barriers. Online social media support groups also give users the option to stay anonymous, a luxury not afforded through in-person support groups, but one that may broaden access to a supportive setting (Klemm et al., 2003).
Social media support groups may take a number of different forms. It may be publically available or accessible by invitation only. It may be hosted over a health specific webpage or formed via a traditional social media platform like Facebook. It may be facilitated by physicians or established by an Individual motivated to connect with others like them. Regardless of the makeup of this online support group, research indicates that participants’ benefit independent of their level of participation (Setoyama et al., 2011; Klemm et al., 2003). While most participants on these types of discussion boards and groups do more “lurking” than participating, they still benefit from the knowledge of the community in regards to learning more about their condition, including information about treatments, research, and prevention (Setoyama et al., 2011). This is particularly true in the context of rare genetic conditions.
For families impacted by rare genetic conditions, and the physicians who work with them, the virtual outreach afforded by social media based support groups does more than offer solidarity (Davies, 2016; Snow, 2016). Health care providers may have difficult time piecing together a clear phenotype. If they have only worked with one or two cases of that condition over the course of their career, the physician has little to work from. But, when families connect over social media, the breadth of information and what is understood about the condition increases substantially. These connections benefit the individual as well as the wider research community, and are discussed in further detail in the following section.
Social media based support groups may also pose some disadvantages to patients. One concern is that written communication over social media can be easily misinterpreted without visual cues (Finfgeld, 2000). The lack of visual cues may also contribute to an impersonal experience (White & Dorman, 2001). Social media based support groups also come with the same issues with misinformation as general social media platforms. That is, without oversight by a healthcare provider, health information shared over a social media support group may lack quality and reliability, based heavily on personal experience over evidence-based information. This issue bears its own pros and cons, and is addressed in further detail in question three.
3. Social media enables the public to influence public health research by engaging with health information online.
Given that content over social media is socially driven through user engagement, if enough people engaged in a particular health issue over social media, it draws more attention to that issue. As a result, the public may incidentally promote health issues that are important to them. A good example of this is the Ice Bucket Challenge. Over the summer of 2014, the Ice Bucket Challenge swept social media (Rogers, 2016). The idea was fairly straight forward–people challenged their friends and family over social media, to pour a bucket of ice water over their head, film it, post the video to social media, and challenge other people to do the same–all with the goal of raising money for research into amyotrophic lateral sclerosis (ALS).
The Ice Bucket Challenge is an excellent example of the public interacting with a health issue online over social media. But, when social media interaction raises $115 million, the impact stops being “virtual,” and goes beyond just raising awareness (Rogers, 2016). A 2016 New York Times article reported that the funds raised by the Ice Bucket Challenge directly contributed to the discovery of NEK1, a gene associated with 3% of all ALS cases, making it one of the most common genes contributing to the disease (Rogers, 2016). When public engagement drives research in this fashion, providers and patients alike stand to benefit. Patients benefit through expanding knowledge, and providers benefit through contributions to research.
Online social engagement like this isn’t always on such a big scale. Sometimes, families engage with health issues that are very personal to them, and may find themselves reaching out over social media for someone they can relate to. This was certainly the case for the Bigelow family, who took to social media when they discovered their daughter had a rare genetic mutation paired with global developmental delays (Huber, 2016; Snow, 2016). With little known about the genetic mutation itself, it was unclear whether her delays were caused by a pathogenic gene variant or something else. So the family turned to social media to find someone who could relate to their experience, in hopes of clarifying her condition. Shortly after their search began, they connected with a researcher who had identified seven other children impacted by the same pathogenic variant (Huber, 2016). With the help of social media, the Bigelow family was able to connect with others invested in learning more.
Today, Facebook spans the genome, a veritable catalogue of pathogenic variants, connecting families impacted by rare genetic conditions. While an individual may not find someone with a shared experience in their town, they can probably make a connection through their favorite social networking platform, breaking through some of the uncertainty that comes from being one of ten cases of a condition. Social media has provided a venue for families to advocate for themselves, connecting with other families and researchers. By teaming up through social media, they break through the isolation typically involved with a rare condition, but they are also able to draw attention to their cause (Huber, 2016; Snow, 2016). This is advantageous to the family and the individual, but this is also immensely advantageous to the researchers and healthcare providers interested in learning more about rare conditions. When the Bigelow’s first posted their query online, the researcher picked up on their post over social media (Huber, 2016). The researcher was able to use social media to recruit from a hard-to-reach population, and the Bigelow’s benefitted by connecting with other families and participating in subsequent clinical trials.