Listening can help restore trust in vaccines

For a summary of this interview,

Do you think the H1N1 pandemic has helped or hindered the debate on vaccines?

I actually think it has hindered it quite a bit. If we can just step back a bit, I think there were a lot of issues before the pandemic in terms of public questioning and concerns around vaccines. With H1N1 there was a disconnect between what the public was built up to and the time the vaccine was ready.

People were anxious and concerned initially and if the vaccine had been available at that time more people would have lined up but it arrived after the peak of concerns about what would happen.

Some of the predecessors of the concerns around the H1N1 vaccine were actually related to underlying concerns of other vaccines. I don’t think it provoked a new wave but I think it amplified underlying concerns that were already there.

There was a public perception that authorities – governments and WHO – were pushed by industry when in fact they [authorities] were asking [industry] for production. I know industry is not perfect but it often becomes the bad boy a lot of the time when in fact when you need and want a vaccine you turn to the manufacturers.

In short, the pandemic didn’t create new concerns it amplified what was already there beneath the surface.

You have said in a JAMA article that the public health response to H1N1 is an opportunity to build public trust. Can you elaborate on that point?

The main point was to say that if we look back at previous episodes of public concerns it’s important to realise that the public has a memory. We can’t look at these things in isolation – whether we’re talking about the pandemic response or routine immunisations or a new vaccine.

In situations where we know there have been previous concerns we should make an extra effort to build public engagement. And every time we introduce a new vaccine, particularly in a crisis situation, it’s important that we’re always thinking about the implications of what we’re doing. Everything we do now will affect the next big thing.

We can look at a crisis as a time-isolated event that you need to get through and move on. It’s an opportunity to involve the public because if it goes well it will be valuable for the next event.

What specifically could have been done differently from a communication point of view?

I think with H1N1 there was disproportionate attention given to potential number of deaths rather than the amount of illness and its impact on lost productivity and on schools. In fact, the pandemic did have quite a toll in that respect and I don’t think the public ever got a well-communicated message about the real impact of H1N1.

Did any country do it well? Is there an example of best practice that other countries might learn from?

Well, the US has had a rough time with public perceptions of vaccines but they’ve also learned and I think that the approach for preparedness to H1N1 was actually quite good. There were a number of town hall meetings and a real effort at citizen engagement, rather than hyperbole. But the other side of that story is that there wasn’t a huge take up of the vaccine so we’re still trying to understand what that tells us.

Is public trust in authorities in decline in general and, if so, how should public health communicators deal with this?

I think it’s a big contributing factor to the public questioning of vaccine safety and relevance. This environment of distrust of public and private institutions, it’s not helping communicate on vaccines.

So who are the best people to communicate if there is scepticism towards authorities, politicians, scientists and the industry?

One important thing is that the public is getting a consistent message across the different communicators. Part of the problem is they hear different things from different sources. I don’t think we’ll ever fully correct that – we are a democracy!

But I don’t think we should give up on the authorities because they are not trusted, I think we should try to shift that. It would be great if the work around vaccines can help restore some trust, whether it’s from scientists or the health community or parents.

I think we really need to engage the public more in general because that’s who people listen to – they talk to each other. We need some positive parent groups and citizens who see the value of vaccination.

We also need good leadership. Leadership has been shy about speaking out about vaccines. And we’ve got to be more proactive about communicating the implications of not vaccinating. We are assuming a lot: we’re assuming a historic acceptance of vaccines, which we shouldn’t. We have not got the message out about the increase in vaccine-preventable disease outbreaks and the notion of herd immunity.

Again though, I wouldn’t give up on distrusted leaders – we’ve got to work on getting it right and rebuilding the trust.

How has the Internet changed public dialogue about vaccines?

I think the Internet has contributed to some of the problems we have with vaccines. It can be a valuable medium for information sharing but this can be to positive and negative ends. I think we also underestimate the role of the internet and social media in facilitating self-organised groups. There has been a lot of use of social media to get the messages of both anti-vaccines and – hopefully – more pro-vaccine groups out there. It’s like a lot of communication media: it can be used for good and bad.

These days a lot of people get information from Internet discussion forums and parenting web communities. Do you think public health authorities should be on those kinds of websites if they are serious about communicating through new media?

Yes, absolutely. I think we need to listen much better. The research I’m doing is trying to develop ways to listen better to what’s going on with discussions – through media, blogs and other areas – because if we don’t understand the concerns we can’t address them.

There are a lot of groups that are sceptical of vaccines. How do you think authorities, industry and others should engage with these concerns?

It’s a challenging question. I do think it’s very important that the people who are expressing concerns about vaccines are not ignored. Part of the growth of these groups of parents and citizens who are concerned – or who are not necessarily against vaccination but are in that questioning mode – comes from their sense that they are not being listened to.

Some people I have interviewed have said that when they began to question vaccines nobody was listening so they became more suspicious. I think there needs to be more engagement. We can’t say generically who should engage and how they should do it because it depends on the setting. But what we can say is that the worst thing would be to ignore the questions.

How can the public’s ability to handle information on risks be improved?

You’ve put your finger on one of the biggest issues: the anxiety and concern by the public health community and providers to say too much about the risk of vaccines. In general, the message has been “take this, it’s good for you – the risk, if any, is small”. And I think the public won’t put up with that any more.

Even though we live in a much more risk-averse society, we need to be clear about these things. Information is out there so even if you don’t tell the public about it, they are going to find out. So you need to be very clear about risks without amplifying it. If there is a small risk, the public should know.

We do need a revitalised communication with the public about science. One of the patterns I’ve seen with anti-vaccination groups, or among those who question vaccination, is that they are not anti-science. They are actually demanding more science. At times there is a sense that once you have a fact that’s it and it never changes – but that’s just not the way science works. We have to keep evolving and learning more.

So, while communicating better about vaccines, there needs to be more communication about risk as well as the balance between safety and risk.

Is openness on risk communication central to winning trust?

It’s crucial. It’s not the sole factor but it’s definitely a crucial factor.

There was a time when it was thought that there was a scientific information deficit and if people were better educated they would be more supportive. But is it fair to say that at the moment in Europe and the US some of the groups that are most sceptical of vaccines are actually at the higher end of the socio-economic ladder, so it’s not a question of ignorance?

Exactly. One of the international development premises is “educate the mother and you’ll have a healthier child” but, as you say, what we’re seeing in developed countries is really turning that premise upside down.

I think that we can’t assume it’s just about education. It can be very emotional – we have to get beyond a debate about “my fact versus your fact” and try to understand what else is going on because it’s not just about lack of information.

At the same time, around the boycott of the polio vaccine in northern Nigeria there were mothers there who were not very well educated but had very strong views on why they didn’t want the vaccine. One of the things they told me was that they hated hearing on the radio that they are ‘ignorant’. If they were ignorant they wouldn’t be questioning the vaccines.

You mention the concerns in Nigeria about the polio vaccine. That hasn’t been a big problem in Europe. But in the UK, MMR has been an issue while the French have had issues with hepatitis vaccines. What explains the differences between countries and cultures?

It’s an interesting phenomenon because some things do get communicated trans-nationally. But it’s very true that there are discrete issues around hepatitis B in France, and the MMR in the UK and US. Some of it is the language of media, but it’s also the political situation.

With MMR in the UK it came on the heels of problems with BSE which was not communicated very transparently and helped erode public trust. In France there had been the tainted HIV blood scandal. So some of it is local political distrust that fomented the issues.

However, some things do cross national borders but often through trust networks. The polio situation really travelled through Muslim networks around the world. And in terms of refusals of the tetanus vaccine, that went through Catholic networks from the Philippines to Africa to Latin America. So when these issues travel trans-nationally it tends to be through a certain social network that’s a trusted link between communities.

The more I research the issue the more I see the complexity of factors that can fuel or calm the situation.

You have funding from the Bill and Melinda Gates Foundation to do research on vaccines. Can you tell us more?

Yes, I’m working on a book and doing a lot of research in this area because vaccines are something the Foundation has prioritised. We have a Lancet series coming out this year on the “New Decade of Vaccines”. That’s a phrase coined by Bill Gates at Davos last year when he committed additional funds – vaccines are the biggest area of health funding at the Gates Foundation. There are a number of things happening in the coming years looking at the future of vaccines so that’s something to watch out for!

Dr Heidi Larson, senior lecturer at the Department of Infectious Disease Epidemiology, London School of Hygiene and Tropical Medicine, was speaking to Gary Finnegan