Information wars: tackling the threat from disinformation on vaccines
BMJ 2019; 365 doi: https://doi.org/10.1136/bmj.l2144 (Published 13 May 2019) Cite this as: BMJ 2019;365:l2144Opinion
Rebuilding trust in immunisation is key to tackling vaccine hesitancy
Opinion
We have reached the point where we should consider compulsory vaccination
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Christopher Exley poses some important questions [1]. One thing I would point out here is how slippery are such terms as “disinformation” and “misinformation”, shifting the issue of whether something is true or not (which is complex) to whether it is politically convenient. An algorithm cannot possibly sort out truth but it may be excellent at suppressing ‘the wrong sort of information’ - which is something quite different, and politically retrograde. Readers can perhaps understand the crudity of this process from this recent Wall Street Journal video [2], though the presentation is glossy enough.
As Exley points out such a high-handed strategy is the last way to earn trust - if that was ever the purpose - and could frankly cause all sorts of social and political turmoil (the USA and Italy anyone?).
[1] Christopher Exley, 'Re: Information wars: tackling the threat from disinformation on vaccines', 16 May 2019, https://www.bmj.com/content/365/bmj.l2144/rr-2
[2] 'What Big Tech Is (And Isn't) Doing to Fight Antivaccine Misinformation', Wall Street Journal, 13 May https://www.wsj.com/video/what-big-tech-is-and-isnt-doing-to-fight-antiv...
Competing interests: No competing interests
The anti-vaccination movement is a great concern not just because of its implication in the resurgence of communicable disease [1], but because it may be a sign of a disinformation epidemic yet to come. It is not a huge leap to imagine a disinformation movement against folate supplements in pregnancy or breast cancer screening, could be next. Once such an association has been embedded into the national psyche, public health campaigning will struggle to eradicate it.
A strategy focussing on trolls, bots and content polluters [2] risks distracting us from a more important battle in the information war. What changes an isolated idea into a public health debacle is not the source but the vehicle of information. The spread of the Autism-MMR scare was catalysed by imbalanced reporting of evidence in the mainstream media lending it legitimacy [3]. Health disinformation arising in today’s age of Twitter and Instagram could be spread much more rapidly, broadly and irreversibly. Internet authors are rewarded with increased footfall by how emotional or surprising their content is, as opposed to its scientific accuracy [4].
In recent weeks an image of the ‘female muscle system’ depicting a graphic of imagined milk ducts superimposed on skeletal muscle was shared over a hundred thousand times on Twitter. Propagators including the BBC highlighted that commenters were shocked that they had not been shown the ‘female muscle system’ before [5]. A Guardian columnist argued that this image demonstrates deficits in medical education that result in substandard clinical care for women [6]. Will teaching the public that lactiferous ducts are skeletal muscles or that they are isolated to females cause harm? Probably not. But it does demonstrate how easily health disinformation can be spread online by even reputable sources.
Mainstream media should be held to higher standards when reporting or sharing health related content as their support adds great weight to its claims. A proactive rather than reactive approach is needed to help protect the public from further health disinformation disasters in the future.
[1] Mahase Elisabeth. Measles cases rise 300% globally in first few months of 2019 BMJ 2019;365 :l1810
[2] McKee Martin, Middleton John. Information wars: tackling the threat from disinformation on vaccines BMJ 2019; 365 :l2144
[3] Hilton S, Hunt K, Langan M, et al Reporting of MMR evidence in professional publications: 1988–2007. Archives of Disease in Childhood 2009;94:831-833.
[4] Berger, Jonah A. and Milkman, Katherine L., What Makes Online Content Viral? (December 25, 2009). SSRN: https://ssrn.com/abstract=1528077 or http://dx.doi.org/10.2139/ssrn.1528077
[5] https://www.bbc.co.uk/news/newsbeat-48051236
[6] https://www.theguardian.com/commentisfree/2019/apr/26/women-anatomy-body...
Competing interests: No competing interests
I share John Stone’s total dismay on reading McKee and Middleton’s ‘Information wars’ article. This continuous rhetoric about ‘anti-vaccine myth’ and ‘disinformation’ is a method attempting to divide public opinion, as well as to distract from the disinformation that is rife in mainstream media.
I used to think that religion was too dogmatic, however in recent years ‘scientism’ has well overtaken. Anyone who dare question vaccination, is immediately labelled, dismissed, silenced or ignored.
Good science should be about recognising the benefits of questions and criticisms in helping science correct its own errors.
The science is never settled, and on vaccination it is particularly inadequate, going back to its inception at the end of the 18th century. There are ample publications and literature written by academics even back then in the 1800s publishing data on the failures, dangers and lack of science regarding the smallpox vaccine. They had nothing to gain from publishing their findings, quite the opposite. (1)
The foundation of vaccination consists of flawed theories, which the world of ‘science’ has embraced as gospel, declaring to the world that the ‘science is settled.’ Those of us who have undertaken the study of this subject due to either a loved one suffering vaccine-damage or worse, or due to studying health and how to maintain it, are becoming very disillusioned and distrustful of the scientific and medical authorities.
These same authorities demonise any of the increasing number of academics who honestly raise concerns about vaccines. Rather than analyse the findings of, for example, Professor Exley, or Gatti and Montanari (2) they are treated like heretics!
Or they may even be expelled from their position.(3) Others remain silent due to the fear of repercussions.
As Sir Graham Wilson, Director of PHLS, 1941-63, stated: (4) ‘In any truly democratic country opposition and the freedom to express opinions contrary to those of the majority are the breath of life, and it is thoroughly wholesome for long-adopted practices to be submitted from time to time to critical scrutiny lest the accumulated weight of precedent is allowed to obscure the need for their discontinuance.’
When will all of our concerns, findings and experiences be heard? It is long overdue!
References
1. A few examples: Jenner and Vaccination, Creighton; The History and Pathology of Vaccination, E. Crookshank (1889); The Vaccination Delusion, A R Wallace (1898)
2. Many vaccines have tiny amounts of inorganic matter, investigation finds; BMJ 2017;356:j596
https://www.bmj.com/content/356/bmj.j596/rr-5
3. Peter C Gøtzsche: Cochrane—no longer a Collaboration; https://blogs.bmj.com/bmj/2018/11/08/peter-c-gotzsche-cochrane-no-longer...
4. The Hazards of Immunisation by Sir Graham Wilson (1967), page 2.
Competing interests: No competing interests
My group researches vaccine safety. We undertake research to understand the role of aluminium adjuvants in vaccination and how these adjuvants may be linked to serious adverse events following vaccination. Upon completing our research we submit it for peer review and if accepted it is published.
Is this what the authors of this editorial consider as 'misinformation'?
The approach taken by the authors of this piece is exactly why vaccine hesitancy exists. Those of us researching the safety of vaccines know that they are not 100% safe for everyone, the vaccine industry knows this and they are required by law to put this information on the patient information leaflets provided with every vaccine. Only the Government and people like the authors of this article deny the potential dangers of vaccination. Their denial is what sparks vaccine hesitancy in the public as the public are very much aware of potential dangers.
Until individuals such as the authors of this article remove their heads from the sand and allow a full and transparent debate on vaccine safety the problem of vaccine hesitancy will only become even more widespread.
Politics should not 'trump' human health.
Competing interests: I receive funding from various organisations to research vaccine safety including, Medical Research Council, Children's Medical Safety Research Institute and Bencard Allergie
I read the article by Martin McKee and John Middleton [1] with dismay, and ask what sense there can be in the fundamental attitude that all opinion favorable to vaccine products is correct (apparently by virtue of being favorable) and all opinion unfavorable to vaccine products malicious. The world they describe is very far from one I am familiar with. In the world I see people share bona fide information on-line, obtained from official sources, scientific articles, Patient Information Leaflets etc. And by ordinary standards they have a right: these are materials which belong in the public domain. I have never encountered anything on the web which plausibly could be identified as state misinformation or espionage about vaccine (it may occur in some territory of cyberspace which I have never visited): what we are talking about by and large is material which is well sourced, but not necessarily favorable to the industry and its apologists. Most troubling is that it is impossible to verify McKee and Middleton's claims that people are spreading false information, let alone deliberately. As with anything there must be some level of error but I am very far from sure that this is the main problem: what I see is people pasting and linking to materials of genuine concern, and which is not being addressed by our governments or officials. However much they may want to marginalise such data under the rubric "the benefits greatly outweigh the risks" or even the grandiose "vaccines are safe" a lot of it is not trivial.
Earlier this year I was lamenting with McKee the "hidden power of corporations" and concluded my short letter with comment [2,3]:
"But still we do not learn. Readers might like to view the list of the CDC Foundation corporate partners (motto: "Together our impact is greater") which includes the Coca-Cola Company but also virtually every other major corporation, and every major pharmaceutical company ... At least Coca Cola was not supposed to improve your health."
Neither has the World Health Organization been historically above suspicion [4], and I have written about problems with measles data over a number of years [5-10] . Whatever the concerns about the spread of measles it should not be at the expense of truth.
I could write at much greater length but what we should have is not an "information war" but an honest discussion about the limits of science and knowledge, and decent respect for people who report harm, rather than the hostility which seems to be the currency. This way we will progress.
[1] McKee & Middleton, 'Information wars: tackling the threat from disinformation on vaccines',
BMJ 2019; 365 doi: https://doi.org/10.1136/bmj.l2144 (Published 13 May 2019)
[2] John Stone, 'Re: The hidden power of corporations', 23 January 2019, https://www.bmj.com/content/364/bmj.l4/rr-3
[3] https://www.cdcfoundation.org/partner-list/corporations
[4] John Stone, 'Fear of the disease is not a reason for confidence in the product...', 21 March 2019, https://www.bmj.com/content/364/bmj.l1259/rr
[5] John Stone, 'Re: MMR, measles, and the South Wales Evening Post' 4 May 2013, https://www.bmj.com/content/346/bmj.f2598/rr/644022
[6] John Stone, 'Re: Measles: Europe sees record number of cases and 37 deaths so far this year', 6 September 2018, https://www.bmj.com/content/362/bmj.k3596/rr-24
[7] John Stone, 'Re: Measles: Europe sees record number of cases and 37 deaths so far this year', 11 September 2018, https://www.bmj.com/content/362/bmj.k3596/rr-29
[8] John Stone, 'Information and Misinformation: the Global Health Security Agenda' 5 March 2019, https://www.bmj.com/content/364/bmj.l981/rr
[9] John Stone, 'Re: Measles cases rise 300% globally in first few months of 2019 - how long is a piece of string?' , 17 April 2019, https://www.bmj.com/content/365/bmj.l1810/rr
[10] John Stone, 'Re: Measles cases rise 300% globally in first few months of 2019', 23 April 2019, https://www.bmj.com/content/365/bmj.l1810/rr-3
Competing interests: No competing interests
Professors McKee and Middleton -
Tremulously I put forward this respoinse. (I am merely an old retired public health physician.)
1. Background - I underwent countless Vaccinations (in the old, true sense of the word) from childhood onwards. I vaccinated and revaccinated my family a few times - when going out to examine patients suspected by the GP to be suffering from smallpox. This was in England before smallpox was declared extinct by the WHO in the seventies.
2. Now to what is these days described as vaccination. Active immunisation was the old term. Most of my professional life in public health in England was spent in promoting imm and vac. Part of the job as medical officer, Deputy Medical Officer of Health, district community physician and all its later variations.
Invariably I engaged with the public - answering and discussing prevention of infectious disease and immunisation with the grownups, school children, teachers, councillors, journalists. Never refused to talk to them. Never talked down to them.. Always discussed.
One one occasion, at least, my action aimed at obstructing thespread of HIV - in the 1980s - led to a threat of court proceedings against me. I said “ delighted”. Sadly the threat did not materialise.
3. There is a yawning chasm, miles wide, between Prof McKee and Prof McKee on the one side of the argument and me on the other. Prof McKee and Prof Middleton have had perhaps different experience while practising public health in England.
May I leave it to the great British Public to decide what is preferred by the public?
No more can I say.
Competing interests: A perennial habit of conversation , an inability to lecture or to hector.
It’s true that there are troublesome trolls and bothersome bots leveraging vaccine hesitancy to further their political agendas on social media. But they are small fish compared to other aspects of health misinformation on social media.
Social media not only survives on user generated content from member’s interacting1, but in the words of Facebook’s creator and CEO Mark Zuckerberg, it thrives on it¬¬s ability to encourage engagement and polarisation2. Users connect and converse with interests in common, or opinion that differ which creates recorded content on the platform. This then allows other users to consume and circulate the content both internally within social media platforms by shares, likes, retweets3, hashtags1 or externally to the social media platform, commonly via email share links. Irrespective of the method used, this sees the discourse become an entity, not only having influence on those that were directly participating in the discourse at the time – but to anyone that stumbles across it thereafter.
It is by these mechanisms that has seen extreme fringe groups’ ideology achieve unprecedented reach and come into the mainstream’s consciousness- anti-vax being the most visible. Old discourse can be circulated and brought into new conversation threads, again and again, like a phoenix rising from the ashes. And like a phoenix rising from the ashes, it is never put to rest. Even Mr Wakefield has credited social media4 for enabling his message to be resurrected (like a phoenix rising from the ashes?).
The main issue for those of us watching the space now however, is that despite a previous statement that Facebook was going to stamp out anti-vaccination sentiment on their platform5, they have now stated that Groups is where they want to focus and how they want to propel the business forward6. But it is these groups that are often spreading the most misinformation in the most damaging ways, allowing fringe groups to find their audience and give their message air. And it’s not only Anti-Vax- in 2018 it was reported that there was an increase in black salve (bloodroot) injuries being seen in Dermatology practices in Australia7 despite it being banned from sale and import by the Therapeutic Goods Administration8 (Australia’s government medicine’s regulator). It was found that international Facebook groups were not only circulating content to ‘educate’ about black salve and it’s ‘therapeutic’ uses to its group members, but their members were also mobilising to flout Australia’s border restrictions and facilitate import of the substance for its Australian members to self-treat.
Anti Vax sentiment is a real issue, but it is only one aspect of many broader health misinformation issues that has traction on social media. It is the Opinion Based Medicine found in groups and that their members are using to inform health decisions that is the most subtle and pervasive in its influence. And it is the Opinion Based Medicine found in the groups’ discourse that is the most difficult to stifle.
1. Ellison NB, Boyd DM. Sociality Through Social Network Sites. In: Dutton WH, ed. The Oxford Handbook of Internet Studies. Oxford University Press; 2013.
2. Friedersdorf C. The Speech That Facebook Plans to Punish. The Atlantic. 11 Dec 2018, 2018;Ideas.
3. Harris JK, Moreland-Russell S, Tabak RG, Ruhr LR, Maier RC. Communication about childhood obesity on Twitter. American Journal of Public Health. 2014;104(7):e62-e69.
4. Glenza J. Disgraced anti-vaxxer Andrew Wakefield aims to advance his agenda in Texas election. The Guardian - Australia edition2018.
5. Combatting Vaccine Misinformation [press release]. March 7 2019.
6. Day 1 of F8 2019: Building New Products and Features for a Privacy-Focused Social Platform [press release]. April 30, 2019.
7. Lim A. Black salve treatment of skin cancer: a review. Journal of Dermatological Treatment. 2018;29(4):388-392.
8. Therapeutic Goods Administration. Black and red salves in treating cancer. Australian Government Department of Health,. https://www.tga.gov.au/node/353. Published 2012. Accessed 5 December, 2018.
Competing interests: No competing interests
Re: Information wars: tackling the disinformation on vaccines
In response to William Flynn: I would suggest he questions why there have always been concerns surrounding vaccination, since its inception? If a procedure is very effective and very safe then it will, most certainly, be whole-heartedly accepted by the public. This has never been the case as regards to vaccination due to the array of vaccine injuries or deaths and also the vast numbers of vaccinated who go on to develop the disease they were supposedly protected from.
Those of us who have spent years studying this subject are deeply concerned about the mainstream media coverage and statements made by medical doctors or public health officials, which generally go unchallenged due to heavy bias.
The recent censorship on this matter has increased, and even if a voice of concern is invited to participate on a broadcast or programme the amount of time they are given is usually minuscule compared to the health professional.
Regarding ‘emotional’ social media comments I have observed, and also experienced, numerous times that it is generally the individuals who are calmly questioning or raising concerns about vaccination that are met with over-emotional and often hostile and aggressive verbal attack. In particular by those with limited knowledge on the subject that have been misled by mainstream media, or even mainstream medical education, to fearfully look upon the unvaccinated as spreading disease.
In the 28 years I have been involved in the subject I have met or corresponded with numerous health professionals who would have shared the same opinion as William Flynn initially. Why did their position change?
They took on the task of INDEPENDENTLY studying the wide range of vaccine literature and data over the last two centuries.
They started to listen to the concerns of their patients.
They started to consider the anecdotal evidence. Some even started to study health.
Yes, I thoroughly agree mainstream media should be held to higher standards when reporting or sharing health-related content as their support adds great weight to its claims. A proactive rather than reactive approach is needed to help protect the public from the ever-increasing health disasters that are occurring now and will worsen if one of the potential causes continues to be protected from independent investigation.
Competing interests: No competing interests