Protecting Public Trust in Immunization

28 Jul

That’s the title of a special article in Pediatrics:

Public trust in the safety and efficacy of vaccines is one key to the remarkable success of immunization programs within the United States and globally. Allegations of harm from vaccination have raised parental, political, and clinical anxiety to a level that now threatens the ability of children to receive timely, full immunization. Multiple factors have contributed to current concerns, including the interdependent issues of an evolving communications environment and shortfalls in structure and resources that constrain research on immunization safety (immunization-safety science). Prompt attention by public health leadership to spreading concern about the safety of immunization is essential for protecting deserved public trust in immunization.

It is quite bizarre that something that is overwhelmingly good for society and good for individuals should become the scapegoat for just about every ailment the modern world has. I’ve seen vaccines blamed for (aside from autism) asthma, AIDS, heart disease, obesity amongst other things and portrayed as part of a global Illuminati agenda to control the world population. I’ve seen people tie it in (or try anyway) to the events of 11th September 2001 and threaten scientists associated with their manufacture with death for them and their children. How the hell did we get here?

The paper from which I’ve included the Abstract above is an attempt to try and recognise how these things have happened and how the medical/science establishment can regain public trust in vaccination.

The paper opens with a little bit of self-chastisement:

Every time a mother holds her healthy infant to be immunized, she is demonstrating great faith in the potential benefit and safety of the vaccine and trust in the clinician who recommended it. Over past years, clinicians and public health leaders have taken for granted the magnitude of that act of trust. We also have basked in the praise that comes with being a participant in the success of immunization in dramatically reducing morbidity and mortality in childhood and changing the practice of
pediatrics.

For doctors, who are by and large subscribers to the scientific mentality, the benefits of vaccination are obvious. Their error has been to not notice that 99.99% of their case load are not subscribers to the scientific mentality and therefore they will not look at things with the same lack of emotion. It is in fact very difficult to do so. Particularly for something like vaccination when we are essentially treating our kids for things they haven’t got. Also difficult to see for emotional rather than scientific people are things like keeping up herd immunity:

“Vaccines are victims of their own success” is the shorthand now used to reflect the reality that, in the absence of vaccine-preventable disease, many parents fear vaccines more than the diseases known to them only vaguely.

Its true. Getting the message through that just because the vaccine-preventable disease is not right here right now doesn’t mean its gone for ever is difficult. And here is another place in which the scientific community have fallen down: they have not got the message through. Until very recently, they have not even tried.

Over the past 10 years the Internet, particularly the web, has grown to every corner of the globe and over the years, those who used to be anti-vaccine cranks have now become trusted gurus to the parents who think that looking on whale.to is the same as doing research. The scientific community has failed to keep up with this. Their solutions (the NHS website for example) whilst very informative are stilted, formal and do not speak to the emotional side/needs of parents.

The Pediatrics paper lists a number of ways for science to regain the trust of parents.

One area that needs increased investment is immunization-safety science;

…….

What is immunization-safety science? Or, more accurately, what are the sciences necessary for protecting public trust in the safety of vaccines? Most of the biological, social, and communication sciences have roles.

Some of these sciences are more central and obvious than others, such as allergy/immunology, epidemiology, and infectious diseases, but anthropology, ethics and political science also have important roles given the multiplicity of questions. Research on the short- and longer term risks and benefits of combinations and timing of multiple vaccines requires a different profile of disciplines than does the question of “what is the value of mandates in public immunization programs?”

Yes. Definitely. These are science based questions that need addressing.

Invest more in public awareness and genuine public engagement around immunization issues. Recognize the number and heterogeneity of publics to be served and the diversity and legitimacy of their questions and concerns.

? Educate the public on the elaborate, already existing US system for research and testing of vaccines, including the responsibilities of the vaccine industry and, particularly, the independent and interdependent functions of industry, the US Food and Drug Administration (FDA), the CDC, the Health Resources and Services Administration, and all their advisory bodies for prelicensure and postlicensure evaluation.
? Educate the public on the function, membership, and selection process for members of key advisory bodies.
? Increase the number and diversity of citizen members on advisory bodies without reducing scientific expertise.
? Give the public sufficient information and adequate time to understand the rationale for any new vaccines before embarking on immunization campaigns, which can be done without delaying protection.
? Engage local communities and parent groups as advocates of new vaccines.
? Avoid the hyperbolic marketing practices of overselling.
? Improve the communication skills of public and private health leaders to present information in perspective, including benefits, risks, and gaps in knowledge. Avoid obfuscation, admit gaps in knowledge, and be available and candid in answering the questions asked, building comfort even when the circumstances are uncomfortable. Take the time to explain changes in recommendations/policy. Such explanations are essential for reducing charges of waffling, indecision, and hidden agendas.
? Invest in research on what is truly driving parents’ questions and concerns and what may be needed to earn/keep their trust in vaccines.
? Decrease reliance on state mandates and in no case push for mandates before evaluating the results of voluntary immunization programs.

Yes, again, good points. However, to me, the key question is not being addressed. How do you intend to do this? What needs to change is how you get these things over to the general public. For example, parents of autistic people generally trust other parents of autistic people. I’m sure that there are some Paediatricians who are also parents of autistic people. Maybe they are even AAP members! Or work for the CDC. Give these people a voice.

Lets see some voxpop ‘interviews’ on YouTube. Nothing stilted, nothing formal, just people doing their job, speaking their minds. If there’s fault, let them admit it.

And you’re going to have to accept I think that there is a generation of parents here who are never going to see it your way. They’re lost. Concentrate on the new parents. If they’re having vaccinations, hold a Q&A but be ready for the hardcore anti-vaxxers. If they’re in for an autism assessment for their kids (or themselves) talk to them, don’t just diagnose and dismiss, let them express their fears. Yeah, it’ll take more time but it’ll be worth it in the long run.

Said the Brit, daring to comment on US health policy 😉

2 Responses to “Protecting Public Trust in Immunization”

  1. María Luján July 29, 2008 at 13:05 #

    From my anecdotical experience, there is no way my trust in immunization such as it is promoted and presented and applied can be restored.
    My son was an atypical severe IgA defficient-between many other CMPs he had- that remained untested and undetected and undiagnosed because our concerns were systematically and continuously ignored by a considered excellent mainstreamed peditrician.
    However, I trust in almost nobody. Neither the mainstreamed peditrician thinking that vaccines are almost inocuous for every child nor the doctor that diagnose with unproven tests CMPs in my autistic son or trying to sell me the “bottled cure” with whatever risky approach on the earth is available. What I trust is the serious science- that it is available- the serious doctor(s)-mainstreamed or not- that also have resulted to be excellent people first man or woman, committed to my son´s health and well being first and above everything and prone to read and to research in a team with us and looking at my son as an unique individual and biologically as a system but first as a human being deserving all their respect and consideration. Besides in a medical condition diagnosed only based on behaviors- aand whose CMPs are being slowly presented more and more and studied more and more- the need of research,analysis and consideration of the most recent literature on CMPs-especially when several are present together- has been very important.
    Instead of considering how to improve public relations, a serious look at the mirror about the “science that has not been done” and a self-diagnostic in the lack of training to prevent, to test and to detect adverse reactions to vaccines should be present IMHO. And I consider that I am not lost or stubborn or based in beliefs.And I am not anti-vaccine.

  2. isles July 30, 2008 at 15:00 #

    I agree with most of the article but think the bit about “genuine public engagement” is not called for. I think it is better to be blunt and acknowledge that science-naive vaccine critics have no role to play other than diverting scarce resources toward placating those who will never be placated.

    The proposal to have more regular Joes on various advisory boards, without reducing the overall level of expertise – I don’t see how you do that. Regular Joes who are interested enough to apply to be on these committees are usually antivaxers, and they create a chilling effect on the professional discourse on the committee – the real experts have to be careful of what they say, for fear of being quoted out of context, and are less likely to want to raise valid concerns because of the likelihood that the antivax contingent will trumpet them in an overblown and unjustified manner.

    Similarly, delaying introduction of new vaccines without reducing protection – the math just doesn’t work. I can see the merit of arguments for slower introduction, but you can’t deny that this reduces protection.

    And finally, they advocate acknowledging benefits, risks, and gaps in knowledge. Like that isn’t being done already? That feels to me like “thank you, sir, may I have another.”

    Other than that, I like the article a lot. 🙂

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