tag@treatmentactiongroup.org

Misinformation and Vaccine Preparedness: The Case for Digital Advocacy

By Erin McConnell
A special thanks to Abraham Johnson, for contributing to an earlier draft of this piece

Hesitancy around immunization has such deep historical roots that it predates the first vaccine. Before the term “anti-vaccine” was coined in the early 1800s to describe those opposing Edward Jenner’s new smallpox vaccine, some individuals had refused to be inoculated using the centuries old method of variolation.1 A half century later, a more organized anti-vaccine movement arose in response to mandates passed by the British government in 1853. Other anti-vaccine movements followed, flaring up throughout history as new vaccines were introduced: backlash followed the measles vaccine in the 1960s, the measles, mumps, and rubella (MMR) vaccine in the late 1990s, MMR again in the 2010s, and most recently COVID-19 in the 2020s.1,2

Anti-vaccine sentiments of the past and present center on strikingly similar themes: nineteenth century anti-vaxxers opposed governments dictating their bodily choices, feared modern medicine, and suspected the government was experimenting on the working class, rationales that still circulate in modern anti-vax spaces today. Such mistrust of government and medicine has been obvious in modern anti-vaccine rhetoric in assertions that the elite have some vested interest in promoting COVID-19 or that the medical community has suppressed discussion of potential harms. Among Black and Indigenous communities, these concerns are often compounded by shameful histories of mistreatment and exploitation by the state and medical system.3,4,5,6

Nonetheless, despite these similarities, modern anti-vax movements are generated and circulate largely on the global internet, with people interacting with sensationalized stories, posts, and retweets while casually scrolling.7 Social media has made it easier than ever for anti-vaccine movements to spread propaganda, misinformation, and reach new recruits. To minimize this damage and ensure that people who need future vaccines are primed to accept them, an effective, global, digital advocacy strategy must be central to vaccine preparedness work moving forward.

If anti-vax narratives have been historically persistent, any wave of vaccine refusal was largely constrained geographically — but globalized social media allows these ideas to cross borders and race through social media networks. These platforms’ functionality makes the problem worse: on Facebook, the closer content is to violating platform policy, such as posts containing hyperbole or misinformation, the more engagement it will generate.8 When it comes to reposts on different platforms, posts containing misinformation generate the most overall engagement and sharing.8 On Twitter and TikTok, posts with higher engagement get pushed to new users through discovery algorithms, and both platforms far outpace YouTube, Facebook, and Instagram in amplifying misinformation.8 Around 90 percent of engagement on posts containing misinformation happens within the first day, making it challenging to refute once people have seen it. One recent study showed that even when platforms attempt to minimize misinformation, around 30 percent of viewers are still unable to distinguish fact from fiction.9

Unfortunately, misinformation about vaccines has been particularly popular on social media. When hashtags like #StoptheVaccines can garner over 700 million views, not only will there be 700 million impressions with anti-vax content on one social media platform, but nearly 235 million individuals are at risk of accepting any falsities as truth regardless of fact checking.10 Shockingly, misinformation about potential COVID-19 vaccine safety, development, and rollout was already spreading on social media before any vaccine had been developed or approved — giving the anti-vaccine movement a head start before public health officials even had data. Exposure to this type of misinformation on social media during COVID-19, especially when it is “scientific-sounding,” was associated with around a six percent decline in intent to vaccinate.11 Previously, online vaccine misinformation campaigns between 2016 and 2017 are associated with reduced measles vaccination rates and a number of outbreaks in Europe.12 With over 33 percent of TikTok users, 53 percent of Twitter users, and 44 percent of Facebook users regularly getting news on these platforms, bad actors have clearly co- opted the role of social media in keeping people informed about public health — threatening vaccination rates and the future of public health as a whole.13,14

The centrality of social media to public communication, coupled with its susceptibility to virality, underscores the need to develop proactive strategies to build trust far in advance of rollout of specific vaccines. COVID-19 anti- vaxxers did not wait for a vaccine to exist before promoting fear and skepticism; public health professionals shouldn’t wait until a vaccine exists to start actively preparing and promoting their benefits. Public health campaigns around vaccines must use social media platforms to push their own, factual, counternarratives and directly address and refute misinformation on these platforms before vaccine rollouts — ideally as they enter Phase III clinical trials.13

As HIV, TB, and HCV vaccine advocates, we can no longer afford to ignore social media or the existential threat of misinformation on these platforms. We must meet communities where they are — including online. Previous attempts to combat anti-vaccine misinformation from health departments, advocacy groups, and professional associations have struggled to reach audiences, analyze social media conversations for audience sentiment, or adapt to the pace of social media.15 This limits the ability of organizations to develop critical rapport with audiences and tailor messages in response to community feedback and conversations.15 As a result, social media messaging about vaccines from these groups can feel hollow and untethered from the communities they are trying to reach. This ultimately decreases engagement with posts as audiences are put off or uninterested in content that doesn’t speak to them, and thus the amplification of truthful, pro-public health messages is dampened.15

Social media campaigns promoting vaccines should go beyond correcting misinformation to actively engaging individuals with credible ties to communities to amplify public health information tailored to their community. By understanding unique community perspectives around vaccine hesitancy through engagement in comment sections, monitoring popular trends, and calling on community members to influence messaging, public health officials can design and tailor social media campaigns that address hesitancy drivers specific and unique to each community’s concerns.16 Social media approaches to combat vaccine hesitancy should use the same tools that misinformation campaigns do – continuous messaging from community members speaking directly to community perspectives and supported by fact checking
from experts.17

TAG’s HIV program developed the HIV Vaccine Social Media Ambassador program with these themes in mind. The program was designed to leverage social media influencers who could foster responsive engagement with their followers to understand the conversation happening within their communities around vaccine hesitancy and to tailor social media campaigns to those concerns. TAG’s goal is to combat misinformation around HIV treatments and future vaccines within the communities most vulnerable to online vaccine misinformation and who stand to benefit most from the scientific advancement of an HIV vaccine.4,6,18 The first vaccine social media ambassador was Johneri’O Scott, an HIV advocate and health influencer who developed original content discussing HIV vaccine research for his audience. Scott’s use of humor to discuss critical health topics has been well received by his followers — garnering over a million views. A single post to TikTok about signs your partner may have an STI received 375.5 thousand likes and over three thousand comments such as, “I am listening but I am also [laughing].” As the HIV Vaccine Social Media Ambassador program continues, we hope to foster scientific literacy and create forums for community dialogue with trusted sources like Scott — and do all we can to limit the ability of anti-vaccine sentiment to threaten our collective health and the success of lifesaving vaccines yet to come.

Endnotes

  1. North Vox. 2022 [cited 2023 Jul 28]. The long, strange history of anti-vaccination movements. Available from: https://www.vox.com/the- goods/22958419/covid-vaccine-mandate-pandemic-history
  2. Vaccination Resistance in Historical Perspective – Organization of American Historians [Internet]. 2019 [cited 2023 Jul 28]. Available from: https://www.oah.org/tah/august-2/vaccination-resistance/
  3. Bagasra AB, Doan S, Allen CT. Racial differences in institutional trust and COVID-19 vaccine hesitancy and refusal. BMC Public Health. 2021 Nov 16;21:2104.
  4. Laurencin Addressing Justified Vaccine Hesitancy in the Black Community. J Racial Ethn Health Disparities. 2021;8(3):543–6.
  5. Whitney E. Native Americans Feel Invisible In U.S. Health Care System. NPR [Internet]. 2017 Dec 12 [cited 2023 Aug 1]; Available from: https://www.npr.org/sections/health-shots/2017/12/12/569910574/native- americans-feel-invisible-in-u-s-health-care-system
  6. Bajaj SS, Stanford Beyond Tuskegee — Vaccine Distrust and Everyday Racism. N Engl J Med. 2021 Feb 4;384(5):e12.
  7. McKee C, Bohannon Exploring the Reasons Behind Parental Refusal of Vaccines. J Pediatr Pharmacol Ther JPPT. 2016 Apr;21(2):104.
  8. Integrity Institute [Internet]. [cited 2023 Jul 31]. Misinformation Amplification Analysis and Tracking Available from: https://integrityinstitute.org/ blog/misinformation-amplification-tracking-dashboard
  9. Sharevski F, Loop JV, Jachim P, Devine A, Pieroni Abortion Misinformation on TikTok: Rampant Content, Lax Moderation, and Vivid User Experiences [Internet]. arXiv; 2023 [cited 2023 Jul 11]. Available from: http://arxiv.org/ abs/2301.05128
  10. Lundy M. TikTok and COVID-19 Vaccine Misinformation: New Avenues for Misinformation Spread, Popular Infodemic Topics, and Dangerous Logical Int J Commun. 2023 May 14;17(0):24.
  11. Loomba S, de Figueiredo A, Piatek SJ, de Graaf K, Larson HJ. Measuring the impact of COVID-19 vaccine misinformation on vaccination intent in the UK and USA. Nat Hum Behav. 2021 Mar;5(3):337–48.
  12. Mbaeyi S, Cohn A, Messonnier N. A Call to Action: Strengthening Vaccine Confidence in the United States. Pediatrics. 2020 Jun;145(6):e20200390.
  13. Liedke J, Gottfried U.S. adults under 30 now trust information from social media almost as much as from national news outlets [Internet]. Pew Research Center. [cited 2023 Jul 11]. Available from: https://www.pewresearch.org/ short-reads/2022/10/27/u-s-adults-under-30-now-trust-information-from- social-media-almost-as-much-as-from-national-news-outlets/
  14. More Americans are getting news on TikTok, bucking social media trend | Pew Research Center [Internet]. [cited 2023 Jul 11]. Available from: https://www. org/short-reads/2022/10/21/more-americans-are-getting- news-on-tiktok-bucking-the-trend-on-other-social-media-sites/
  15. Steffens MS, Dunn AG, Leask J, Wiley KE. Using social media for vaccination promotion: Practices and challenges. Digit Health. 2020 Jan 1;6:2055207620970785.
  16. Zhang J, Xue H, Calabrese C, Chen H, Dang JHT. Understanding Human Papillomavirus Vaccine Promotions and Hesitancy in Northern California Through Examining Public Facebook Pages and Front Digit Health [Internet]. 2021 [cited 2023 Aug 1];3. Available from: https://www.frontiersin.org/articles/10.3389/fdgth.2021.683090
  17. French J, Deshpande S, Evans W, Obregon R. Key Guidelines in Developing a Pre-Emptive COVID-19 Vaccination Uptake Promotion Int J Environ Res Public Health. 2020 Jan;17(16):5893.
  18. Editor TM. Using Social Media to Increase HIV Vaccine Trial Participation Among Black Folks [Internet]. 2023 [cited 2023 Aug 1]. Available from: https://www.thebody.com/article/social-media-hiv-vaccine- trial-participation-black-folks
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