Social Change
Social change action with informed and engaged societies
Social Change
As of March 15 2025, The Communication Initiative (The CI) platform is operating at a reduced level, with no new content being posted to the global website and registration/login functions disabled. (La Iniciativa de Comunicación, or CILA, will keep running.) While many interactive functions are no longer available, The CI platform remains open for public use, with all content accessible and searchable until the end of 2025. 

Please note that some links within our knowledge summaries may be broken due to changes in external websites. The denial of access to the USAID website has, for instance, left many links broken. We can only hope that these valuable resources will be made available again soon. In the meantime, our summaries may help you by gleaning key insights from those resources. 

A heartfelt thank you to our network for your support and the invaluable work you do.
Time to read
5 minutes
Print
a- a+
Published 2 years ago
Last updated 2 years ago
Read so far

We need a gold standard for randomised control trials studying misinformation and vaccine hesitancy on social media

0 comments
Author: Sander van der Linden, May 5 2023 - Vaccine hesitancy and the spread of misinformation on social media have been recognised by the World Health Organization as an urgent threat to public health, with potentially lethal consequences.1, 2 During the covid-19 pandemic, US [United States] president Joe Biden concluded that misinformation on social media was "killing people."3 Research about the negative impacts of health misinformation online is increasingly being published, but how can we effectively counter vaccine misinformation on social media? Correlational, exploratory, and descriptive4 studies are overabundant, but we lack a broader framework for using this research base to inform our efforts. We know a lot already from computational approaches about the unique topics and narratives spread within anti-vaccination echo chambers5 and have documented the types of health misinformation that are prevalent on different social media platforms.6, 7 However, systematic reviews show that real world interventions on social media are few and far between.4 Notably, the field also lacks a gold standard for randomised controlled trials (RCTs) conducted on social media. This lack of standardisation poses fundamental challenges to causal inference, raises major ethical questions, and is riddled with inequities in data access and coverage outside the global north.

A challenge many scholars and practitioners currently face is finding out what "works" when it comes to promoting vaccine acceptance and countering vaccine-related misinformation on social media. One obvious point of difference with traditional clinical trials is that social media researchers do not have full access to the platform, procedural aspects of the design, and the necessary raw data to make valid and complete inferences about the outcome of the trial.8 Causal inference faces many challenges. For example, researchers may not be in control of the randomisation procedures used in social media experiments; the nature of the treatment "exposure" (ie, which users see the "treatment" and for how long), some aspects of which might be set by the companies' algorithms; and what outcome measures are available.8, 9 Progress has been made in linking social media discourse to actual vaccination uptake,5, 10 but social media companies typically limit access to key behavioural data,8 such as what people watch, share, or click on. Consequently, existing data provide a limited and biased snapshot of the larger population.6 A gold standard for randomised trials on social media would deliver transparent and reproducible evidence.

Countering misinformation and promoting vaccine acceptance on social media is not without ethical challenges. While it is generally accepted that some content posted online may be considered part of the public domain - and can therefore be (re)used in observational research - actively intervening or even exposing people to misinformation as part of an experimental procedure presents a potential barrier to delivering insights in this nascent field.11 For example, on social media it is not always possible to obtain written and informed consent from individuals because interventions are delivered via ad campaigns or placed directly into a user's feed so there is no direct contact with users. In one prominent study, researchers "nudged" people directly on Twitter via private messages without informed consent. They argued that obtaining consent would have disrupted the naturalistic social media experience.11 Unlike the Helsinki declaration, No standardised ethics procedures - such as those of the Helsinki declaration - exist for social media research. Some ethics committees may not require ethics approval for observational research, whereas others do. Some won't allow targeted intervention work on social media, whereas others might if the data are fully anonymised, though substantial variation exists in handling data privacy and compliance with data protection regulations.12 The lack of an overarching international ethics framework creates an unlevel playing field for researchers. One proposal could be to borrow guidelines from established protocols in medicine around the handling of sensitive data.

Important questions surround the role of experts in promoting vaccine acceptance. Although doctors are typically among the most trusted professionals, during the covid-19 pandemic some medical credentials were used to peddle fake cures and outright misinformation about vaccination.13 Although it is important to interrogate how science is communicated,14 the repeated questioning of science and expertise by postmodern scholars has inadvertently played into the hands of anti-vaccination movements and post-truth politics.15 The role of medical professionals in countering misinformation and promoting vaccine acceptance therefore remains an important subject of debate.

Systematic reviews have indicated that nearly all research on the nexus between social media, misinformation, and vaccine hesitancy originates from the global north, or what psychologists often term "western, educated, industrialised, rich, democratic (WEIRD)" populations. Consequently, there is a severe lack of insight from the global south and other parts of the world.16, 17 Given the diverse social and cultural drivers of misinformation susceptibility and vaccine hesitancy,17 this is an important gap in the literature. How can randomised trials be conducted and replicated in other countries? Social media companies often offer less research support for non-English speaking scholars and practitioners. Moreover, strong asymmetries exist, in which only some institutions are granted access to social media data or platforms. For example, my colleagues and I were able to carry out a large randomised experiment on the YouTube platform to empower people to spot manipulation,9 but this was mainly possible because of an existing collaboration with Google. Most researchers do not have such active collaborations with social media companies; therefore we need to democratise and diversify the process through which researchers can obtain data from, or work with, social media companies to understand how to best counter vaccine hesitancy.18

A recent article14 claimed that scientists' desire to "cure misinformation" has led to "rushed" interventions. I have not observed any evidence for this claim. On the contrary, scientists have been meticulously studying how to counter misinformation on social media for many years, but are confronted with numerous challenges. What we need now is a gold standard for how to conduct research to counter misinformation and vaccine hesitancy on social media across the world.

Footnotes

Competing interests: SvdL receives research funding on misinformation and vaccine hesitancy, consults for governments and social media companies on the topic and is a member of the WHO [World Health Organization] infodemic management working group.

Provenance and peer review: Commissioned, not externally peer reviewed.

This article is part of a forthcoming collection involving The BMJ and associated BMJ journals, proposed by Advancing Health Online (AHO). Emma Veitch was the lead editor for The BMJ.

References

[1] van der Linden S. Misinformation: susceptibility, spread, and interventions to immunize the public. Nat Med 2022;28:460-7. doi:10.1038/s41591-022-01713-6 pmid:35273402

[2] World Health Organization. Immunizing the public against misinformation. 2020. https://www.who.int/news-room/feature-stories/detail/immunizing-the-pub…

[3] BBC. Covid misinformation on Facebook is killing people—Biden. 2021. https://www.bbc.co.uk/news/world-us-canada-57870778

[4] Wang Y, McKee M, Torbica A, Stuckler D. Systematic literature review on the spread of health-related misinformation on social media. Soc Sci Med 2019;240:112552. doi:10.1016/j.socscimed.2019.112552 pmid:31561111

[5] Rathje S, He JK, Roozenbeek J, et al. Social media behavior is associated with vaccine hesitancy. PNAS Nexus 2022;1:pgac207.

[6] Guntuku SC, Buttenheim AM, Sherman G, Merchant RM. Twitter discourse reveals geographical and temporal variation in concerns about COVID-19 vaccines in the United States. Vaccine 2021;39:4034-8. doi:10.1016/j.vaccine.2021.06.014 pmid:34140171

[7] Suarez-Lledo V, Alvarez-Galvez J. Prevalence of health misinformation on social media: systematic review. J Med Internet Res 2021;23:e17187. doi:10.2196/17187 pmid:33470931

[8] Pasquetto IV, Swire-Thompson B, Amazeen MA, et al. Tackling misinformation: What researchers could do with social media data. HKS Misinfo Rev 2020;1. doi:10.37016/mr-2020-49.

[9] Roozenbeek J, van der Linden S, Goldberg B, Rathje S, Lewandowsky S. Psychological inoculation improves resilience against misinformation on social media. Sci Adv 2022;8:eabo6254. doi:10.1126/sciadv.abo6254 pmid:36001675

[10] Wilson SL, Wiysonge C. Social media and vaccine hesitancy. BMJ Glob Health 2020;5:e004206. doi:10.1136/bmjgh-2020-004206 pmid:33097547

[11] Pennycook G, Epstein Z, Mosleh M, Arechar AA, Eckles D, Rand DG. Shifting attention to accuracy can reduce misinformation online. Nature 2021;592:590-5. doi:10.1038/s41586-021-03344-2 pmid:33731933

[12] Hunter RF, Gough A, O'Kane N, et al. Ethical issues in social media research for public health. Am J Public Health 2018;108:343-8. doi:10.2105/AJPH.2017.304249 pmid:29346005

[13] Swire-Thompson B, Lazer D. Reducing health misinformation in science: a call to arms. Ann Am Acad Pol Soc Sci 2022;700:124-35doi:10.1177/00027162221087686.

[14] Freiling I, Krause NM, Scheufele DA. Science and ethics of "curing" misinformation. AMA J Ethics 2023;25:E228-37. doi:10.1001/amajethics.2023.228 pmid:36867171

[15] Kata A. Anti-vaccine activists, Web 2.0, and the postmodern paradigm--an overview of tactics and tropes used online by the anti-vaccination movement. Vaccine 2012;30:3778-89. doi:10.1016/j.vaccine.2011.11.112 pmid:22172504

[16] Limaye RJ, Holroyd TA, Blunt M, et al. Social media strategies to affect vaccine acceptance: a systematic literature review. Expert Rev Vaccines 2021;20:959-73. doi:10.1080/14760584.2021.1949292 pmid:34192985

[17] Simas C, Larson HJ. Overcoming vaccine hesitancy in low-income and middle-income regions. Nat Rev Dis Primers 2021;7:41. doi:10.1038/s41572-021-00279-w pmid:34112811

[18] Roozenbeek J, Zollo F. Democratize social-media research - with access and funding. Nature 2022;612:404. doi:10.1038/d41586-022-04407-8 pmid:36513834

Click here to read the original opinion piece as published on The BMJ (2023;381:p1007).

Image credit: Mikhail Nilov via Pexels (free to use)

As with all the blogs posted on our website, the content above does not imply the endorsement of The CI or its Partners and is from the perspective of the writer alone. We do not check facts and strive to retain the writer's voice, as is detailed in our Editorial Policy.