Alternative Facts on Social Media: Implications for Patient Education
I along with 79% of American adults, per a 2016 PEW Research Center study, have a private Facebook account. One day, I browsed my news feed and saw someone ask in a Facebook group, “Does anyone know anyone or is on immunotherapy that recommends the most effective [sic] for lung cancer?” I was surprised on how this person would take a leap of faith to ask complete strangers in an unmoderated group for treatment advice. All it takes is one post filled with misinformation to put this patient on a dangerous path. The sharing of false patient education has serious implications for patient advocacy groups and their patient education initiatives, as they engage more patients on social media. Industry has also invested in social media platforms and social media listening, to gain insights on where and how patients participate in disease and health care discussion and information gathering.
Social media platforms like Facebook have been criticized as a vehicle for “fake news” or “alternative facts,” as famously coined by Kellyanne Conway, the US Counselor to President Donald Trump. While sensationalized during the 2016 US Presidential election, this phenomenon began in health information and education nearly 10 years ago. Examples include the sharing on social media of ubiquitous news articles about how certain exotic-sounding herbs, roots, and spices can kill cancer cells, and news articles developed and propagated by the anti-vaccines movement. And according to a 2017 study done by UK newspaper outlet, The Independent, misinformation of this kind is shared more often than factual articles from reputable news and media organizations.
At the pinnacle of the issue, Facebook responded by launching a feature that allows users to mark a news story as false; however, it still leaves out the second-hand sharing of false or disputed information amongst users via unmonitored direct messaging and closed group postings, which are hard to monitor due to their discreet nature.
Therefore, it is important to call out misinformation and provide information from reputable sources. And while patient advocacy groups are the most trusted sources of online health resources, they are one of the least utilized, according to the 2016 Makovsky/Kelton Pulse of Online Search Survey Results.
Patient advocacy groups are in position to realign the turbulent information and education paradigm on social media. Groups over the years created platforms, such as Facebook pages and message boards, moderated and monitored by professional staff that ensure dissemination of accurate and balanced disease and treatment information. By patients and caregivers using and participating on credible platforms led by patient advocacy groups, patient advocates and industry can better understand and address unmet needs, challenges, and disease management experiences, while dispelling any misinformation.
In conclusion, the challenge for both advocates and industry is how to maximize the awareness and reach of patient advocacy groups and resources that can be shared on social media. Here are ways industry can help in a compliant manner:
- First, build and refine the social media capacities of patient advocacy groups, so they can become more strategic in their approaches to sharing and disseminating content on social media. Industry is permitted by trade codes and regulations to provide financial support for patient advocacy group staff to be trained by independent third-parties on social media. However, any content generated for social media must be controlled by the groups themselves, maintaining their own editorial independence without undue influence from industry.
- Second, build patient advocacy groups’ awareness on the challenges and gaps in patient education on online and social media platforms. Industry can spearhead an audit, which our firm has extensive experience conducting, to identify gaps in educational information and the platforms used to house such information, e.g., Facebook, Twitter, YouTube, etc., and then develop a strategy aligned with the community to address them. This proactive approach enables patient advocacy groups to get the facts out to the public quickly, with the goal to establish consensus and credibility around the truth, before rogue outlets attempts to do so with misinformation.
- Third, create unique partnerships and collaborations between patient advocacy groups, health care professionals, industry, and social media companies to improve addressing and dispelling fake health news. These collaborations can touch on improving monitoring of health news, tackling online consumer fraud, and building awareness and capacity of the public on identifying misinformation.
Patients and their caregivers, friends, and family can be overwhelmed, confused, and desperate in finding the right information at the outset of diagnosis. The ease of use and accessibility of social media make it convenient to seek information as well as support. Credible, strong patient-focused partnerships between patient advocacy groups, industry, and other stakeholders are needed to ensure patients are equipped with the right information, tools, and resources to properly make decisions to achieve quality care and the best possible outcomes.
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