FEARBOLA AND THE ALS ICE BUCKET CHALLENGE: HOW SOCIAL MEDIA IMPACTS GLOBAL HEALTH AND SCIENTIFIC RESEARCH
The emergence of social media has drastically changed how people share and receive information. It has also altered how we learn about current events; keep in touch with family and even how we make healthcare decisions. In recent times, social media has also been seen to have a profound impact on global health and scientific research. In 2014, the third and fifth most searched for trending terms on google globally were “ebola” and the “ALS ice bucket challenge” respectively. Both of these events brought science into the spotlight and much of their exposure can be attributed to tremendous discussion over social media.
Social media can be considered democratizing because it gives everyone a voice but at the same time can also be highly unregulated in its content. Platforms such as Twitter can only give snippets of information and are often glamourized or exaggerated to attract more attention. While this might be an effective platform for companies looking to market products or services, this may cause complications for those consuming information regarding scientific research and health. There is already extensive research done on how traditional forms of media such as newspapers and television often miscommunicate science to the public due to lack of understanding or stretching of the facts for a better story (1). Those members of the general public who post about scientific research without understanding the full story might further exemplify this issue. People may also be subjective to “confirmative bias” and be more likely to interact with information found on social media that agree with a particular personal belief regardless of accuracy (2). On the other hand, social media also has tremendous potential to garner huge amounts of public attention for global health. This could greatly benefit scientific research that is often not a top priority for government policy makers. There is a widely known 90/10 gap in research funding, 10% of funding is focused on conditions accounting for 90% of global disease burden (3). Particularly there are a group of neglected diseases that are concentrated almost exclusively among impoverished populations living in marginalized areas (4). Given their low profile, these conditions are often left out when public health agendas are formulated. Viruses such as ebola would have been considered a neglected disease prior to its outbreak in 2014. As seen in campaigns such as the ALS ice bucket challenge, social media can be used to raise tremendous amounts of awareness and funds for scientific research. However social media can also negatively impact global health as seen with the intense fear of an ebola outbreak in the fall of 2014.
The ebola outbreak of 2014 was considered Science magazine’s breakdown of the year (5). What began in the Guinean village of Meliandou quickly spread to Liberia and Sierra Leone and then ravaged Western Africa (5). Margaret Chan, the director-general of the World Health Organization (WHO) described the outbreak as “the greatest peacetime challenge that the UN and its agencies have ever faced.” (5) While smaller ebola outbreaks have occurred in the region before, many attribute the severity of the 2014 outbreak to shaky local healthcare systems, uncoordinated response by governing bodies and slow pace of assistance from outside groups (5). This resulted in immense fear by North Americans of an outbreak in the western world, which some have coined “fearbola.” (6) This fear of an ebola outbreak in the western world was largely irrational as there were only three confirmed cases and one death in the United States (6). Much of the fear expressed was propagated through misinformation regarding the disease on social media. The public’s skewed risk perception regarding ebola could possibly be due to its mysterious origin, high death rate of those infected and severe symptoms (7). As human’s we are evolutionary adapted to transmit fear to one another and the introduction of social media has allowed us to voice our opinions to a broader audience than ever before (7). A poll conducted by the Harvard School of Public Health in October 2014 highlights how the public was largely misinformed regarding the transmission of ebola as 85% believed they would get ebola if an infected person sneezed or coughed on them while 52% felt there would be a large ebola outbreak in America over the next year (8). On Twitter, the top ten articles shared by physicians tweeting about ebola were completely different than the top ten articles shared by the general public. This suggests that perhaps these stakeholders might be interested in different topics and there might be some discrepancies in the information being shared by the two groups of articles. Many social media users in West Africa also started sharing false information about supposed cures and prevention methods for ebola (9). As a result, organizations such as the United States Center for Disease Control and Prevention (CDC) and WHO had to increase their presence on social media to dispel these rumors (9). Social media can be problematic in times of panic as it makes the voices of experts harder to hear and make people more susceptible to false information. However during times of crisis many speculate that social media can play a crucial role for early warning systems. In a time of crisis it is vital to get information out as quickly as possible even at the expense of it not being validated at the same level as official announcements.
In addition to propagating misinformation during the ebola outbreak, social media also proved to be detrimental due to promoting apathy for the condition through what has come to be known as “internet meme” culture (10). An Internet meme is an idea, image or phrase that is spread between people often as mimicry. Viral phrases shared about ebola on social media such as “more americans have dated Taylor Swift than have been diagnosed with ebola” highlight the mockery made of the condition by comparing it to the love life of a celebrity. Many other memes arguably crossed the fine line between being funny and offensive, especially when online apathy translated to real life apathy with the production of “ebola Halloween costumes. ” When a condition such as ebola is made into a joke, it can be hard for people to remember the severity of the issue and be prepared in case of an actual emergency. In this way, it can be seen that social media played a detrimental role in the fear caused by the ebola outbreak.
Perhaps a more promising example in 2014 for the potential of social media to be used in scientific research is the ALS Ice Bucket Challenge. The challenge involved one pouring ice water on them self and uploading the video to social media while nominating others to do the same while donating to ALS research. Over the summer of 2014, over $100 million was raised for the ALS society, a 3500% increase over the same period the previous year (11). This unprecedented increase in support for ALS research highlights the ability of social media to garner massive amount of public support for a variety of causes. Perhaps more importantly, the ALS Ice Bucket Challenge also underscores the importance of social media in the future of fundraising for nonprofits. A study by nonprofit consulting firms show that among 55 large nonprofit organizations, the size of email lists rose by an average 14% in 2013 while Facebook and Twitter audiences grew 37% and 46% respectively (12). “The Social Media and Non-profits” report has found that 91% of nonprofits analyzed were using Twitter and 86% were using Facebook while newer platforms such as Snapchat were used less than 4% of the time (13). Despite the relatively high adoption of social media by nonprofits, the report also stated that over half of the nonprofits surveyed were spending less than 10% of their time updating and checking their social media page (12). While perhaps it would beneficial for non-profits to invest more time into social media, Paul Gallagher of The Independent recommends that non-profits not invest all their resources trying to replicate the success of the ALS Ice Bucket Challenge and instead recommends that non-profits incorporate social media to raise long-term awareness of their cause (13). Many marketing analysts have attempted to break down the success of the ALS Ice Bucket Challenge. Despite many marketing firms offering steps to “create” a viral Internet campaign, there is really no predicting what is picked up by social media to become viral. This is a perhaps a downside of social media as dubious information can often go viral due to their shocking claims, as seen with the numerous celebrity death hoaxes that regularly circulate online. John Deighton of Harvard Business School attributes the popularity of the ALS Ice Bucket Challenge as a way to increase ones “social capital” or popularity on social networks. The challenge was successful because it was moderately difficult to do, had a significant “look at me” factor and was a charitable cause (14). Research has shown that social media users are more receptive to sharing and interacting with media that is a considered a charitable cause and are largely less receptive to sponsored advertisements or content pushed by for-profits companies (12). It has also been seen that messages with viral potential must trigger an emotional response in the receiver (15). However many also argue that the charitable message of the challenge was loss in favour of using the ALS cause to enhance “digital narcissism” and receive social media popularity (14). While the massive success of the campaign might be partially due to self-serving interests, it is without a doubt that the ALS Ice Bucket Challenge resulted in an immense increase of awareness for ALS and highlight how social media can have a profound impact on scientific research in the future.
The emergence of social media has had a profound effect on many aspects of how society shares and receives information. In regards to global health, it has the potential to be a tremendous tool in reaching a broader audience than ever before but at the same time can be detrimental as voices of experts can be clouded by inaccurate information. It is vital health agencies have a strong social media presence to combat the dubious information being shared on social media. If used effectively, health agencies can use social media as a means to reach massive audiences in a short amount of time during times of crisis. It can also be seen that social media can have a profound impact of research funding, as it is able to garner massive public support. The ALS Ice Bucket Challenge suggests that the public is open to support science and funding agencies should be more open to promote scientific advances to the public through outlets such as social media.
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