Communicating Science: The sticky MMR nontroversy

It’s 2013, and almost unbelievably, the MMR nontroversy has raised its ugly head once again. Recently, a measles outbreak in Wales has left numerous people ill, and Andrew Wakefield is on the front pages declaring that he was right after all. Isn’t it time we put this one to bed? Just why is this myth so very sticky?

What follows here is a modified version of a paper submitted during my studies of science communication, so you can expect the language to be a little more academic than usual for this blog. Given that the crux of my argument is that academic language isn’t doing the job when it comes to communicating about the MMR, I’m aware of the irony…

If you want the cliff notes, here they are:

  • Parents aren’t and weren’t stupid to believe that the MMR may have a link to autism, because that was the message that they were given at the time.
  • Parents were led to believe that there was an equal amount of evidence on both sides of the debate, and that there was a sustained debate about the purported link, by multiple media accounts which opted to provide “balance” above and beyond accuracy.
  • Parents didn’t just frivolously decide not to vaccinate – they were more likely to not vaccinate, for example, if they had experience with a family member or friend’s child who had developed autism – they decided based on their experiences with autism, their worries about their children, and their understanding of the perceived debate or controversy within the medical community about the safety of the vaccine.
  • While it was necessary to debunk the false claims about the MMR, doing so by dismissing parents’ fears as irrational, superstitious, or stupid was ineffective, and didn’t address the genuine fears and concerns that parents held. (And really now, how many times have you immediately done a 180 on a deeply held belief because someone called you stupid?)
  • There were a lot of opportunities to communicate with parents, but most of the communications were instead addressed to scientists and doctors who already believed the MMR was safe. These communications weren’t clear to everyone, and weren’t accessible to people who needed information to make a crucial decision.
  • Communications that were aimed at parents often didn’t come from trusted figures, such as their own GP or health worker, but from larger institutions or organisations that the public didn’t know, and given the worries, didn’t trust.
  • And, of course, the important note – all the best available evidence says that (excepting for some side-effects, as with all medicines) the MMR is safe and effective, and that there is no link with autism.

 

It has been reported that rate of measles infections has risen dramatically in countries like the UK and France (Roxby, 2011), and in 2011, the World Health Organisation pushed back its target date for eradication of measles to 2015. The controversy surrounding the MMR vaccine has endured in spite of attempts to refute the bad science which plagues its supporters, and the effects of this are now being felt. Despite the fact that the Wakefield’s original paper (Wakefield et al, 1998) has been widely discredited, and even retracted by the Lancet (the original journal of publication), there is still mistrust among parts of the population in Europe, and further afield, and still people who firmly believe that there is a link between the MMR vaccine and autism.

In 1998, Andrew Wakefield and colleagues published a paper in the Lancet (Wakefield et al, 1998) which linked the measles virus with a bowel disorder, and then later developmental disorders, in the form of autism. At a press conference announcing the paper, however, Wakefield spoke about the MMR vaccine, linking it to autism in a way that was neither proven nor investigated by his initial paper and suggesting that individual vaccines are preferable to the combined MMR vaccine (BBC, 2008). Just one month later, in March 1998, 37 scientific experts gathered to review the evidence, and concluded that there was no evidence to support a connection between the MMR vaccine, but the damage was already done (BBC, 2008).

Though many reports have emphasised the safety of the MMR vaccine (Demicheli et al, 2012), and debunked any potential links between it and the autism, the idea has proved to be a resilient one. It is arguable that referring to the MMR vaccine as controversial lends an undeserved credibility to the suggested autism link by implying that there is still some debate about the safety of the vaccine, or that the link to autism is merely unproven, rather than disproven. Articles some 12 years after the publications of the first refutations still refer to a controversial debate which will be reignited, speculation, and suspicion (Reid, 2012).

The years since Wakefield’s controversial press conference have been characterised by a public mistrust in science, exacerbated further by incidents such as “Climategate” (Holliman, 2011), and Diederik Stapel’s data falsification scandal (Vogel, 2011). In particular, a number of high profile cases involving pharmaceutical companies hiding data (such as Roche, and their Tamiflu data – BMJ Tamiflu Campaign, 2012), or otherwise misleading the public and the medical profession about the effectiveness of their products has further served to deepen the mistrust that some groups feel towards pharmaceutical companies, and this behaviour has undermined the credibility of these companies when it comes to being completely truthful about the effects of their drugs.

Those whose trust has been damaged by these incidents need not look far to find contradictory information regarding the safety of their drugs, and in particular, regarding the MMR vaccine. Groups such as Autism Action Network maintain that the MMR vaccine does cause autism, and collect articles and information which they consider evidence of the vaccine-autism link (Autism Action Network, 2012). Their articles, filled with emotive language, sceptical of the consensus that the vaccine is safe, and painting Andrew Wakefield as a maverick who is taking on the financially motivated pharmaceutical companies, are typical of those found on websites which have sprung up to support Andrew Wakefield and his conclusion that the MMR causes autism.

The 1998 paper which Wakefield and colleagues published was a small case study comprising of just 12 subjects, and the stated subject of the paper was not vaccination, but about digestive disorders and a possible link with developmental disorders in children. Although the study did not examine the any aspect of the vaccination (i.e. the hypothesis that three separate vaccinations are safer than a 3-in-1 vaccination), the vaccine is mentioned in the results, where Wakefield notes that “In eight children, the onset of behavioural problems had been linked, either by the parents or by the child’s physician, with measles, mumps, and rubella vaccination” and “One child (child four) had received monovalent measles vaccine at 15 months, after which his development slowed (confirmed by professional assessors)”.  Though these bold statements are at the heart of the MMR controversy, they were published in a scientific paper in a paid-access journal, meaning that they might have gone unnoticed without the further media attention stirred both by Wakefield, and later by his supporters.

In March 1998, a month after Wakefield’s initial press conference (which had already been the subject of numerous newspaper articles warning about the dangers of the 3-in-1 jab – Guardian, 1998), the Department of Health in the UK convened a Medical Research Council to examine the evidence presented by Wakefield (and others), and to establish how best to advise people regarding the vaccination. The research council consisted of 37 experts in fields such as virology, immunology, child psychiatry, and gastroenterology. The report (DoH, 1998) which they produced concluded that there was no evidence of a link between the MMR vaccine and autism. Their mistake? The report started with the words “Dear doctor”.

With a report produced so soon after the initial press conference, the Department of Health, along with other official bodies, had a chance to effectively communicate to the public, and to engage with them by listening to their fears, and addressing them. Indeed, Goldacre (2008) points out that the initial reporting regarding Wakefield’s paper was quite metered (compared to later coverage), and that it was only in the following years, as prominent figures (such as The Blair family) became involved, that the scandal really began to grow, so there was ample opportunity to engage with the public and ensure that accurate reports about the safety and effectiveness of the vaccine reached the public in such a way that they could understand and appreciate.  Instead, the report they produced seems to have been done with the deficit model of science communication (PUS) firmly in mind (Serpell & Green, 2006). Rather than communicate directly with the public, the primary communication was addressed to doctors, who were to advise parents about the vaccine. The communication is well referenced, and very clear from the point of view of a doctor, but does little to address the fears of parents who were likely to arrive for vaccinations having read countless stories about the dangers of the vaccine. The communication is not one which could be handed to parents themselves to read, but rather is intended as a reference source for a doctor, so that he or she may tell parents that the vaccine is safe. The communication is based on the flawed assumption that parents, and the public in general, are waiting to be “filled up” with the scientific findings about the vaccine, and importantly, assumes that the trust between doctor and patients had not been damaged by a high profile doctor claiming that parents may have harmed their children by vaccinating them. Later studies (Casiday, R et al, 2006) have shown that parental trust in doctors was, in fact, damaged by the MMR scandal, and that, of those surveyed who had rejected the MMR vaccine, almost all (88.7%) felt that their doctors were too dismissive of parents’ concerns about vaccine side effects. In relying on doctors to relay the information, and in not attempting to engage with parents and address their concerns, the Department of Health fell back on the out of date PUS model of communication, and parents failed to respond. The Department of Health failed to realise that merely stating the evidence, and having an authority figure relay the evidence, did not adequately address the concerns raised by worried parents, and this communication failure, in part, allowed for the fears to take hold and grow. Additionally, Petts & Niemeyer (2004) note that many groups of parents, felt that they did not have the opportunity to discuss their concerns properly with their GP, and had only passive or unhelpful relationships with their GP. Combined with their observations that all the groups preferred opportunities for direct discussion of the issues, and information provision from health providers, it is not hard to see how people may have felt that the information regarding MMR safety wasn’t as clear as scientists thought. Even though participants in the study had generally low exposure to official information about the vaccine, all groups were aware of the information being presented in the media, making unprompted references to autism.

Those who supported Wakefield, and his assertions regarding the MMR autism link, were much more proactive about engaging with the public. In 2003, a made-for-tv movie called Hear the Silence dramatised the vaccine controversy, painting Wakefield in a very favourable light. Wakefield is a named character in the movie, the mother of an autistic son is a pastiche of clichés, meeting opposition from her husband, friends, and uncaring and unfeeling doctors and experts, until Dr. Wakefield explains what has happened to her son. The movie is quite heavy handed, suggesting the Wakefield’s work is being covered up because it doesn’t suit drug companies (who make too much money from the vaccinations). As noted by Aaronovitch (2003) reviewing the movie, it is pitched as a “dramatised account of the work of Dr Andrew Wakefield and his colleagues at the Royal Free Hospital in the late 1990s, and a mother’s search for what happened to her child”, the implication being that the movie is, in essence, true, even though it is, in actuality, a highly coloured and distorted piece. Importantly, however, the piece is not a paid-access journal, it is not a restrictive letter, nor is it a closed door conference. The movie portrays Wakefield as a maverick hero, the parents of autistic children as people struggling against an injustice that has been wrought upon them by evil vaccine makers, and it played exceptionally well into the fears and worries of parents in the aftermath of Wakefield’s publications. By engaging with these fears and worries, and hopes of a cure, the movie communicated effectively with parents who had autistic children, parents who were worried about the vaccine. Though the movie was inaccurate, biased, and mostly not factual, the movie engaged people in a way which the Department of Health had failed to do.

By the time Hear the Silence was broadcast, several papers had been published refuting the claims made by Andrew Wakefield, yet Goldacre (2008) notes that less than one third of all of the broadsheet articles on the MMR vaccine in 2002 referred to the growing body of evidence demonstrating the safety of the vaccine. Just 11% of the articles mentioned that the MMR was (and is) regarded as safe in the 90 other countries it is used in. Goldacre criticises not only the media, but the scientists who, with no media training, were unprepared to counter the emotional anecdotes and sensationalist press. With poor public engagement and communication by the scientists, the studies which refuted the MMR vaccine’s connection with autism were lost among stories by non-science reporters, with comments from celebrities rather than specialists, and those celebrities had plenty to say.

Some celebrities have contributed significantly to the controversy surrounding the MMR, and the media, perhaps in a misguided attempt at impartiality (Ward, 2008), often seek to “balance” a piece on the vaccine by including both an expert (typically a doctor, scientist, or other qualified person) and someone who holds a different opinion (concerned celebrities, parents of an autistic child, leader of an anti-vaccination action group, etc.).  Actress Jenny McCarthy is a vocal supporter of the anti-vaccination movement, and claims that her son developed autism as a result of the vaccine (and has subsequently been cured by a number of alternative therapies for autism). Despite her lack of medical qualifications, McCarthy’s opinion on the vaccine may hold more weight than scientists give her credit for, with a recent survey finding that approximately one quarter of US parents trust the advice of a celebrity about vaccinations (Time, 2011). The same survey showed that, while most parents (76%) do trust their doctors, a significant majority (65%) also trusted parents who said that their children had been harmed by vaccinations. By juxtaposing celebrities like McCarthy with legitimate experts, the media have not only given those who are anti-vaccination a platform, but they have also given them a boost in credibility by association, and one which they do not deserve. Quoting Offit, Gross (2009) notes that the media have helped to perpetuate vaccine myths, in presenting two sides of an issue with equal time and weight afforded, even when only one side has supporting evidence.

In 2003, Verstraeten et al had completed a study of over 140,000 children, concluding that there was no link between vaccines and autism (in particular, the vaccine preservative thimerosal, thought by some to cause autism – the preservative was removed as a precautionaery measure, even though it contains ethylmercury, which is removed relatively quickly from the body, and not methylmercury, which bioaccumulates and has been linked with developmental defecits in children). By 2004, the Institute of Medicine had finished a review of over 200 studies for any possible link between autism and vaccines, and unanimously found that there was no evidence of a causal relationship between the two. The myth persists, Kaufman (2007) argues, because of the volume of conflicting and contrasting information available. With many anti-vaccination sites presenting themselves as legitimate sources of scientific information, many parents see expert advice and conclusions as just one more opinion on the issue, assigning equal weight to these opinions as those found on the anti-vaccination sites, perhaps taking their cues from the ever-present “balance” mantra which appears to have stuck firmly with science journalists.

The safety of the MMR has been verified by numerous studies, and this message has been well communicated to the professional audience of doctors, nurses, and healthcare professionals, but it’s clear that while this scientific evidence may be persuasive to some groups of people, it may not be as effective at persuading the true target audience – parents who will decide whether or not to vaccinate their children. It is comforting to assume that facts “speak for themselves”, but this fallacy ignores the greater political, social, and economic factors and consequences of a parent’s decision.

Pattison (2001) notes that the kind of composite knowledge held by ordinary people, founded in a more complex view of reality than that experienced by scientists, is often perceived by scientists as being superstitious or irrational, and something which needs to be destroyed. He points out that ‘scientists must take care not to treat fear and reservation as ignorance and then try to destroy it with a blunt “rational” instrument’. This oversimplified notion of superstition as a guiding force for parental decisions regarding the MMR vaccine does not acknowledge the perceived risks that parents must weigh when deciding to vaccinate. Parents’ decisions on whether to vaccinate their children were not wholly informed by the scientific evidence surrounding the safety of the MMR vaccine – McMurray et al (2004) found that their decisions were informed and affected more significantly by personal experience than by scientific evidence, and that the parents perceived the risk and long term effects of autism to be much worse than the risks associated with measles, mumps, or rubella. Those parents who chose not to vaccinate their children made the choice because they knew a child or children with autism; by contrast, parents who had experienced the long term negative effects of measles, mumps, and rubella were more likely to vaccinate their children. To merely dismiss the experiences of the parents who chose not to vaccinate their children is to trivialise the concerns of parents whose fear and mistrust of the official pronouncements of safety is founded not entirely in superstition, but in their own experiences and understanding of the information communicated to them.

A significant contributing factor to the understanding of the information communicated to the public regarding the scare was the journalistic presentation of the information. In their report “Towards a better map: Science, the public and the media”, Hargreaves et al (2003), showed that it is incorrect to assume that parents were unaware of the information regarding the safety of the MMR vaccination, but that the way it was communicated did cause confusion. Hargreaves et al performed surveys which aimed to find out how opinions and understanding of the MMR controversy (and other topical science issues) changed over a period of time (approximately 7.5 months), and examined this in context with the reporting on the story. In their first survey, they found that 39% of respondents incorrectly assumed that there was an equal amount of evidence on both sides of the debate, and in their second survey, this number had risen to 53% of respondents. The application of the journalistic norm of balance is likely to have played a part in this, as information presented as “both sides of the story” did not make clear the differences in the quality of the information and, as noted by Dixon & Clarke (2013) may have lead readers to infer equal status or expertise to the conflicting views. An additional, interesting discovery from the survey was the fact that 49% of people stated that their main reason for feeling confused about scientific issues in the news was the complexity of the science issues themselves.

Bellaby (2003) also notes that parents’ behaviour regarding the MMR is not necessarily irrational – pointing out that challenge to authority (including scientific authority) is not unexpected in a healthy democracy, and that the way to deal with such challenges is not just about disseminating the best information, but about two way communication and a transparency in the presentation of evidence. Despite these observations, the message today is the same as it was in 1998, when Wakefield first claimed to have found something which caused autism – parents get their information from a wide range of sources (Time, 2011), and scientists are hard-pressed to compete with the emotional stories and appeals of parents struggling with autistic children and no hope of a cure. Baker (2008) notes that the studies which appeal most to scientists, those which are the most “elegant” are likely also the most difficult for a parent to understand, and that scientists need to find some way to make these dry, detached studies as compelling as the anecdotes and small case studies presented to support the link between autism and the MMR vaccine.

Covolo et al (2013) note that public perception of presumed risk associated with influenza vaccines was high, and that the uptake was not optimal, suggesting that there have been lasting effects from the MMR controversy in the way people perceive vaccines and public health programs. Scientists need to acknowledge the social context in which parents receive and understand the information they disseminate, and not treat any confusion or concerns as something to merely be quashed.

Often, when a new study which show something groundbreaking, or something which is in sharp contrast to the current understanding of something, it is because a mistake has been made. Whether that mistake is intentional or accidental, the process of peer-review, other scientists repeating the work and not achieving the same results, usually shows up the mistake, and the result is published in a journal. Though this self-correction is at the heart of the scientific method, it is often misrepresented by the media, and thus, poorly understood by the public. A fairly common occurrence (the publication of a paper, and the further publication of a paper which disputes or rebuffs the findings) turns into headlines which first read that “coffee causes cancer”, only to read “coffee doesn’t cause cancer” or “coffee may prevent cancer” mere weeks later, and it serves to fuel the mistrust that the public has for science in the wake of its larger and more public scandals (climategate, Vogel, etc.). Though this self-correction is crucial, it is portrayed, and thus appears, as if “science” cannot make up its mind, and can’t be trusted to get things right. Though it would serve their reader well if they did so, many science journalists are simply not sceptical enough of the press releases which land on their desks. As noted astronomer Carl Sagan says, “extraordinary claims require extraordinary proof”, and while waiting for that proof might ensure more accurate articles, it might also mean fewer revenue-increasing exclusives, scare stories, or scandals.

While it is easy to lay much of the blame for the MMR controversy at the feet of the media, scientists are not without blame. Offit and Coffin (2003) note that scientists need to change the way they communicate in order to take account of, and counteract, the way that the claims are reported. Though facts may speak for themselves in a scientific context, simply providing these facts, and claiming that if the public does not understand them that it is a fault with the media, or with the public themselves, is a reiteration of the deficit model (Mikulak, 2011), and it’s clear that it is ineffective. Time (and declining immunisation rates, along with climbing infection rates) has shown that it is not enough to conduct studies which refute Wakefield’s claims and publish the results in a press release; the story must be made compelling, emotional, and personal, as well as informative. Many scientists, however, seem to feel that it is the media who are at fault in the MMR controversy, claiming that reporting of the MMR story is what drove parents to avoid vaccinating their children (Speers and Lewis, 2004; Mikulak, 2011), but the failures in communication lie not just with the journalists, but also with the scientists who have not engaged with the public, and who seem often to base their communications on the out-moded PUS (public understanding of science) or deficit model of communication. Offit (Gross 2009) wishes that scientists would “do a better job of communicating theoretical risk and the difference between coincidence and causation. Once you raise the notion of a possibility of harm, he says, ‘it’s hard for people to get that notion out of their head.’”

I believe that, in cleaving to the PUS model of communication, in not engaging with the public and recognising and understanding the source of their concerns, and in hoping that merely providing some papers which refute Wakefield’s claims will somehow fill the gaps in knowledge and correct the deficit in public knowledge regarding MMR, scientists are as responsible as the journalists for the continuing MMR controversy. The damage done by the MMR controversy has led the public to change the way they consume scientific information, and to doubt previously trusted sources, which has manifested as doubt in other vaccines, and damaged public trust in health authorities. The health and wellbeing of children is a highly emotive, often politically volatile area, and while the media led with impassioned and heart-rending stories of damaged children, science responded with epidemiological studies.

 

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