Why rumors about vaccines spread -- and how to rebuild trust

Why do people distrust vaccines? Anthropologist Heidi Larson explores how medical rumors originate, spread and fuel resistance to vaccines worldwide. While vaccines cannot escape the "political and social turbulence" that surrounds them, she says, the first step to stopping the spread of disease is to talk to people, listen and build trust.

I study rumors.

Not tabloid gossip

or the kind of rumors
that are making stock markets crash --

or soar --

but the kind of rumors
that affect your health ...

and the world's health.

Like eating a lot of garlic

or drinking a lot of water

is going to help
protect us from coronavirus --

if only.

Rumors have a bad reputation.

They're seen as not fact,

wrong,

or "just a rumor."

But I've studied rumors for years,

and one thing I've learned
is that they all have a story,

and often, an important story.

One of the most moving or alarming
rumor episodes that I investigated

was in northern Nigeria.

I was working with UNICEF's
Global Immunization programme.

And it wasn't the rumors themselves
that I found so alarming;

it was the global impact of those rumors.

The rumors were suspecting

that the polio vaccine
was actually a contraceptive.

It was controlling populations --

or maybe it caused AIDS.

No, no, maybe it's the CIA
spying on them or counting them.

I mean, why else would they have people
knocking on their door again and again

with the same polio vaccine?

When children were dying of measles,

no one was coming with measles vaccines.

This wasn't about getting the facts right.

This was about trust.

It was about broken trust.

Why so much distrust?

It wasn't the mothers who were
particularly distrusting, actually.

It was the local leaders,

the religious leaders,

the local political leaders.

It was the governor of the state of Kano

who decided to boycott

the entire polio eradication
effort in that state ...

for 11 months.

Why such distrust?

Well, it was 2003.

It was two years after 9/11.

And they were convinced that the West,

and particularly the United States,

was at war with Muslims.

And they knew that the West,

and particularly the United States,

was a huge supporter --

and funder --

of the global polio
eradication initiative.

They had their reasoning.

That lack of trust,

that "just a rumor or two"

cost the polio eradication program
500 million dollars

to reset the clock,

to regain the progress lost
during those 11 months

and beyond.

The Nigerian strain of the polio virus
traveled to over 20 countries,

as far as Indonesia.

The cost of a rumor.

The Nigeria episode was one
of many episodes that I investigated

when I was with UNICEF

and earned the title of the "director
of UNICEF's fire department."

(Laughs)

We -- at that point I realized
I never really had enough time.

I was too busy putting out the fires
and not enough time to understand

what was driving
not just the individual episodes,

but why was there an epidemic
of these happening around the world.

I left UNICEF and went back to research --

applied research --

and I set up in 2010 what I called
the Vaccine Confidence Project

at the London School of Hygiene
and Tropical Medicine.

I convened anthropologists,
epidemiologists,

psychologists,

digital media specialists

and mathematical modelers.

We set ourselves the task

to investigate historic episodes of rumors

and their impacts,

from trying to figure out
what were the early signals,

what were the amplifying factors

and the impacts,

how did they get traction,

so we could start to understand
what we should be looking for,

how we could help governments

and immunization programs
be more alert and responsive

to early signals of problems.

It was an early warning system.

In 2015, we developed
a vaccine confidence index.

It's a survey trying to investigate
to what extent do people agree

or disagree that vaccines are important,

they're safe, they're effective --

they work --

and somehow they're compatible
with my religious beliefs.

We've run this with over hundreds
of thousands of people around the world,

trying to get our finger on the pulse
of confidence and trust,

but also, more importantly, looking
at when that trust goes up or down,

because we want to see
when it starts to decline,

that's the time to jump in,

to get there before there's a crisis
like the Nigerian one.

We also set up 24-7 media and social media
monitoring around the world --

multilanguage --

listening for what's going on
in vaccine conversations,

trying to pick up early concerns
or changes in sentiment

that we should be paying attention to.

We've created an ecosystem
of different types of information

to try to understand:

what are the public thinking
and how can we engage?

We look for early signals.

When we find one,

we have a global network of collaborators
in a number of countries

who have more local
intelligence in that setting

to try to understand --

is this signal misinformation,

or is something brewing
that we should know about?

In London, we have a bigger picture.

We watch the swarms of rumors,
not just traveling locally

but jumping countries.

We've seen them jump
from Japan over to Colombia,

through Europe and around.

They move.

We live in a hyperconnected environment.

One of the things
that we found fascinating,

and we've learned
a lot in the last 10 years --

this is our 10th anniversary,

this didn't start yesterday,
this rumor problem --

and one of the things we've learned

is in our global monitoring,

that Europe is the most
skeptical region in the world.

France won the prize, actually.

(Laughter)

By far.

And actually some of those rumors
have traveled to other parts of the world.

But we were trying to understand Europe.

Hmm. Why Europe?

I thought the US was really --

had some of the most skepticism,

but boy, I was wrong.

And a political scientist,
a colleague we work with,

Jon Kennedy,

he took our data
from 28 European countries

and he looked at it

and correlated it
with political opinion polling.

And what did he find?

He found that people who are most likely
to vote for a populist party

also were the ones most likely
to strongly disagree

that vaccines were important,
safe or effective.

What did we learn?

Vaccines cannot escape
the political and social turbulence

that surrounds it.

Scientists were unprepared
for this tsunami of doubt

and questions and distrust.

What -- why are vaccines
so ripe for resistance?

Well, we identified a number of things,

but one:

they're highly mediated by government

that requires, regulates
and sometimes recommends vaccines --

or often recommends
and sometimes requires.

Big business makes vaccines,

and neither institution,
government or big business,

are high in the trust ranks these days.

And then there's scientists
who discover and develop vaccines,

and they're pretty elite

and not accessible to the general public,

at least the language they speak.

Third, we're in a hyperconnected
environment with social media these days,

and people can share
their unfettered views,

concerns, anxieties and worries

and find a lot of people
that think the way they do,

and think maybe their worries
are worth paying attention to.

And finally,

vaccines touch every single
life on the planet.

What other health intervention,

besides water,

touches every single life?

So if you're looking
for something to disrupt,

it's a perfect stage.

Perhaps that's one of the reasons
that we need to pay more attention

and rebuild our trust in issues.

People are asking all kinds of questions.

They're asking,

why are vaccines --

and these are the kinds of things
we're hearing in our social media --

why can't my child have
a personalized vaccination schedule?

What's the wisdom of so many vaccines?

What about all those ingredients
and preservatives?

These are not crazy people,

they're not uneducated;

they're actually worried mothers.

But some of them have come to me
and said, "We feel ignored,

we feel judged if we ask a question,

and we even feel demonized

that maybe we're part of some
antivaccine group."

So we have some listening to do.

And maybe that's why last year,

there was research that found

that in six months in 2019,

online --

this was with hundreds --

100 million different users
on social media --

although the numbers of individuals
who expressed in their online groups,

they were positive,

as groups,

the ones who were the most negative

were recruiting
the conversations in the middle

that were undecided about whether
they wanted to get vaccines.

The highly negative --

what we might call
the antivaccine groups --

were recruiting the undecided

at a rate 500 percent faster

than the provaccine groups.

500 percent faster.

They were more nimble,
they were responsive

and they were listening.

Most people believe that vaccines are good

and they believe in their importance.

But that belief is under attack.

We need to build in
more opportunities for conversation.

And there are ways to do it.

It's not easy for some
health professionals

to have conversations
where their authority is questioned.

It's uncomfortable.

And they're just too busy
to listen to all these questions.

But we need to do something about that,

because we're losing
a lot of concerned parents

that just want a conversation.

We should get volunteers
trained to sit in waiting rooms,

to be on hotlines,

to have online chat forums,

to have chat boxes.

In younger kids,
with younger kids in school,

teach them about immune systems

and teach them that actually,

you know that vaccine
your little brother got?

Well, it just inspired
your natural immune system.

It's a great thing and this is why.

We need to build that confidence;

we need to listen.

Despite all this questioning --

and there's a lot of it --

I hear probably more
than a lot of people --

I am an optimist.

And my optimism
is with a younger generation.

The younger generation
who actually now are becoming very aware

of the risks of social media,

the false news,

the false identities,

and they're starting to embrace science.

And some of them are a group of children
whose mothers refused to vaccinate them.

Last spring of 2019,

18-year-old Ethan Lindenberger

went on Reddit and put out a post.

"My mother doesn't believe in vaccines.

She's really worried they cause autism.

In fact, she strongly believes that.

But I'm 18.

I'm a senior in high school.

I can drive a car, I can vote

and I could go get my own vaccine.

Can someone tell me where to get it?"

That post went viral.

It started to get
a whole younger movement going.

I saw Ethan speak at a conference,

the Global Vaccine Summit
at the EU last fall.

He spoke eloquently,

and I was impressed,

in front of a whole forum.

He told his personal story,

and then he said to the group,

he said, "You know, everybody
talks about misinformation,

but I want to tell you about
a different kind of misinformation,

and that's misinformation
that says that people like my mother,

who is a loving mother,

is a bad person because
she doesn't give me vaccines.

Well, I want to tell all of you
that she didn't give me a vaccine,

because she loves me

and because she believed
that that was the best thing for me.

I think differently

and I will never change her mind,

but she's not a bad person."

That was the message from a teenager.

Empathy, kindness and understanding.

We have an abundance
of scientific information

to debunk false rumors.

That's not our problem.

We have a relationship problem,

not a misinformation problem.

Misinformation is the symptom,

not the cause.

If people trust,

they'll put up with a little risk
to avert a much bigger one.

The one thing that I want and I hope for

is that we as a medical
and health community

have the moral courage and humility

to productively engage,

like Ethan,

with those who disagree with us.

I hope so.

Thank you.

(Applause and cheers)