The Social Media Users Who Could

by Deb on December 28, 2011

Vaccination Saves Lives

I‘ve been umming and ahhing on whether to post this, because it doesn’t really fit with this blog. I know I do vaccine posts occasionally and it’s always a balancing act, but this isn’t really about vaccines at all. It’s about information, and if bloggers and social media users (ie you readers) don’t talk about this, who will?

I’ve talked about it more on my education blog because it’s one of my particular interests as a part of critical literacy – how do we decide what is a good source of information? This is even more important now because information can come from anyone and anywhere – you’re reading this on a self-published blog! As those who are actually using the internet the most, we have a vested interest in shaping its direction, and I for one hope that we can evolve ways of judging the reliability of the information we are getting.

While I have enormous fun socialising, reading and arguing on the internet, one of the problems that comes up all the time is – how real is it? How many of us feel the need to switch off occasionally to reconnect with reality? And wouldn’t it be better if we could find ways to blend our worlds? I mean if I’m going to put so much time and energy into the internet, it would be nice to know that it actually achieves something.

Enter Stop the AVN.

I first discovered the Australian Vaccination Network when my eldest daughter was born and the vaccination question came up on a mothering forum I frequented. I must admit my first reaction to reading their site was jaw-dropping shock – are you kidding me? How can people write this stuff? There were no references. There were silly mistakes confusing viruses and bacteria. Things that screamed out to me with my specialist training, but wouldn’t necessarily be obvious to people in different fields. And running through it all was the conspiracy thread – you can’t really trust the government, it whispered, they are in the pocket of big business and don’t have your best interests at heart. But it was never so blatant, and I can see how it would appeal to a demographic who were (at that time) deeply discontented with the long-running Howard government.

And right upfront were the pitiful stories. The images of children ‘damaged’ by vaccines. But while they were tragic and difficult to read, the only connection to vaccines was ever ‘her parents believe.’ As a new Mum myself I knew that parents believe all sorts of weird and wonderful things, especially when their children are in pain or upset. It doesn’t make them true. And I was deeply angry that these poor children and their families were being used to hurt other children, which is becoming heartbreakingly obvious with the outbreaks of vaccine preventable diseases and the death and hospitalisation of unvaccinated children.

I spent several years on my little corner of the internet writing about why the information from the AVN was not trustworthy, and then I ventured onto Facebook and discovered Stop the AVN. This is a group of like minded individuals, held together by nothing more elaborate than a Facebook page. And we are dedicated to taking the fight against the misinformation of the AVN off the internet and into the real world.

There have already been several successes, especially the complaint to the NSW Health Care Complaints Commission, which found that the AVN provided information that was ‘false, misleading and solely anti-vaccination’ and issued a warning against them as a danger to public health. And their many financial irregularities were investigated by the Office of Liquor, Gaming and Racing, resulting in the loss of their charitable fundraising licence and further investigations. [Update: The AVN have since won a court case to show that the HCCC did not have jurisdiction to issue the warning. It does not affect the validity of the warning, even though it has been retracted.]

Meryl Dorey, who is the AVN, is no longer the go-to person for television and radio to provide ‘balance,’ whatever that means in science, and ordinary Australians are fighting back in blog comment sections across the internet, pointing out that this is not a matter of other people’s opinions, which might deserve respect, but scientific facts. This is incredibly exciting, it shows that our community is beginning to have the conversations we need to have to keep the internet useful, not leaving it to governments and Google but doing it ourselves.

And just as the tide was turning, as citizens of the internet were deciding what was valid information and the standards we should be working to, the Woodford Folk Festival decided to give Meryl Dorey a platform to tell lies about autism. That may sound harsh but the title of her proposed talk was a lie referring to a paper that, as usual, didn’t say what she thought it said, so it’s a relatively safe call. In fact I’ve written out a prediction of the top 5 lies she will try to tell, I’ll be very interested to see how many I get right. [Four as it turned out, I missed one.]

This was picked up by bloggers and Stop the AVN, and MamaMia and traditional media got on board. Along with literally thousands of commenters, ordinary internet citizens voicing their displeasure, writing emails and standing up for our right to trustworthy information. Eventually Woodford realised what a public relations nightmare they had wandered into and they have changed the format to include an actual, you know, immunologist and a moderator from Doctors Without Borders.

I have to admit I’m not entirely happy with this – how exactly do you balance a conspiracy theorist who has been found to be a danger to public health against a professor who has spent years studying and doing genuine research and a doctor from a Nobel prize winning organisation? I think it is false, and I don’t know why people would want to get health information at a folk festival anyway. But at least they took notice of the outrage.

Emotions and manipulation through fear? Check.

Nuance and facts? Not so much.

An example of using the power of the internet and social media to effect real world change? Priceless.

To all my readers I have both a question and a challenge – how do you decide who is worthy of your time? How do you decide what on this enormous, un-edited, un-reviewed, free-wheeling, not-quite-linked-to-reality smorgasbord of information overload you will trust? Do you read critically, asking yourself if an article has the evidence to back it up? (And please do answer in the comments, as a teacher I want to know.)

To all the quacks and conmen who are currently cluttering up my, and your, internet, I have something to say:

Look! Up in the sky!
It’s a bird, no.
It’s a plane, no.
It’s social media users who are learning to take back our internet, and we’re developing into effective real-life activists.

_____________________________________________________

Update: This blog is part of a social media blitz, of linked and co-ordinated posts all going live at the same time as an offline event. And now that the embargo is off, that ending was more than a bit of nostalgia. One of the real world things Stop the AVN did today, was to organise a plane with a banner to fly above Woodford as the forum went ahead with a simple message:

Vaccination Saves Lives

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{ 16 comments… read them below or add one }

cass December 29, 2011 at 1:49 pm

Hmm. I have to agree with this. I struggled to make a decision about vaccinations. The thing I found most difficult was the complete lack of any non-biased information on the subject (The bets I have found is the US Dr Sears Vaccination book).

The AVN site lost me when they complained that the vax site used an echidna (too pointy) as a mascot.

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Deb December 29, 2011 at 5:14 pm

That is hilarious that they would complain about an echidna. I find that the government sites are excellent, especially the immunisation handbook. But I’m aware I have not only a science background but biology, so it’s a familiar format to me. And now I’ve been doing it for a while it’s easy to navigate, when I started it was very confusing to find things.

I find it frustrating that the question even comes up at all. Not frustrated at parents, but because it shows how successful the anti-vaxxers have been. We don’t question our electricity supply or build our own house because we don’t trust engineers or builders. Most of us wouldn’t dream of telling a pilot what to do. So why is vaccination a difficult decision?

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Michelle December 29, 2011 at 2:15 pm

I often find the internet can be quite “self-regulating” if you’re willing to look beyond the surface. An example is if I want to buy something. I’ll look around for prices and I might find a site that I haven’t used before. Normally the first thing I’ll do is search the site’s name and see what other people have to say about it. I do the same with any sort of information site – if I think they have something to say, I search it and see what other people have to say.

In these relatively “early” days, I also find the quality of a website can sometimes be an indicator – if people are not smart enough to build a decent website then I question their other abilities though perhaps this is unfair.

Lastly, I guess I do read “critically” – anything that screams conspiracy theory will usually pop out at me. Making broad claims about anything is usually a problem… not very many things are black and white!

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Deb December 29, 2011 at 5:19 pm

Thanks. That’s a great trick to teach my students. I think what you’re talking about is also taking responsibility – not just accepting what you read but actively checking it for yourself. If I could get students to do that I’d be really happy! 🙂

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Suzi Perryman via Facebook December 29, 2011 at 3:12 pm

Could you post a link to the ‘Stop the AVN’ please? I can’t find it in a search.

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Science@home via Facebook December 29, 2011 at 5:04 pm

Sorry, http://www.facebook.com/stopavn Facebook doesn’t seem to like the iPad very much.

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Pip December 29, 2011 at 10:07 pm

As a mother of a severely Autistic child I find it backward and offensive when people like Dory use our fear and anxiety against us to gain a flimsy platform against vaccinations. Using Autism for her argument is abhorrent. Real answers need to be found, lies just create a roadblock.

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Deb December 29, 2011 at 10:27 pm

Exactly, Pip. Thanks for sharing, I really hope that answers are found sooner rather than later.

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Robin Byrne December 30, 2011 at 12:20 am

I like the World Health Organisation “Good information practices for vaccine safety web sites”. It provides a framework for assessing information on the internet.

http://www.who.int/vaccine_safety/good_vs_sites/en/

A good place to start, and some advice that followers of the AVN would do well to take.

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Deb December 30, 2011 at 8:32 am

That’s a great link, definitely worth passing it around to everyone.

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Andy December 30, 2011 at 2:54 pm

As a blogger, I avoided the vaccination issue for a while because, frankly, I’m not qualified to offer medical advice. However, I followed the online discussions and began to notice things I was qualified to comment on as they required only high-school level maths and science – and I was advanced in both.

This is when I saw the AVN’s tendency to get even the simple things wrong. Percentages, chemical names, statistics, simple logic (formal logic, not so-called “common sense”) – often wrong. Very often. Then I noticed similar problems with like-minded groups around the world.

So, while I’m still unqualified to debate immune response to pathogens versus response to vaccines, I can see when someone doesn’t understand simple maths and science and I can choose not to trust their understanding of things that are too complex for me to grasp.

Whilst I do sometimes see errors on the pro-vax side of the discussion, they are usually not repeated without correction and they are far fewer than those from the anti-vax lobby.

I guess I apply similar “tests” to other issues. I look for the most extreme silliness and shy away from it.

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Pixie January 8, 2012 at 4:51 pm

I have quite a few science geek friends, including some who’ve worked in govt. health departments who KNOW how much a drug company has to go through to get a vaccination on the market these days. My eldest has been involved in a couple of medical trials too, it’s no small amount of effort they go to. Yes, there’s some drive for profit, but there’s also a huge drive to expand our base of knowledge about the human body.

When reading panic driven anti-vax articles I look for the fear-inducing buzzwords. Many anti-vax articles use bold text to draw attention to panic words, something which you just don’t see in well reasoned articles (they use things like logical headings for ease of information finding). The holes in their arguments are usually blindingly clear. I go into them with a level of scepticism because I value scientific method and reasoned discussion. I have little respect for those throwing around fear-tactics to encourage submission (sadly I see this in some doctors too, but it’s part of how I measure good quality care too; am I being scared into submission or guided with educated reason and real stats).

And a friend put together this website, loaded with stats and links to official websites and research, to counter the common anti-vax arguments: http://antiantivax.flurf.net/
One of the parts that strikes me about my friend’s article is the encouragement to do your own research. Education and knowledge squashes fear. If two arguments contradict each other, I’ll go with the one that links to real research and encourages me to research and learn from the efforts of qualified, educated specialists in the relevant area.

I also have the mamamia article bookmarked. Sadly when I guide people to a reasoned counter argument my suggestion is usually met by silence because people are scared and I’m not forcing more fear on them, I’m quietly suggesting varied and educated reading.

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John T. January 16, 2012 at 10:51 pm

I agree that internet is a great source of information. However, I believe that all that is said here is not true. If I am taking an important step or decision then I always ensure that I cross check the information with a reliable source before using it practically. I do not reply completely on the info available on web.
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Sylvia@MaMammalia January 18, 2012 at 2:19 pm

Very interesting mix of ideas here! I am also passionate about the dissemination of accurate information to the public so I’m happy to put in my 2 cents.

Before becoming a full-time mother, I was a full-time biologist. I’ve conducted research in the biomedical field as well as in evolutionary biology. So when it comes to anything biological, health, or science-related, I am extremely skeptical!

On the open internet, I look for intelligent and honest use of references. I decipher whether someone is writing an opinion or a survey of facts. Often, it is a mix. I also look for inconsistencies in logic, conflicting statements, and false or stretched conclusions. Mainstream media about science is RAMPANT with incorrect conclusions drawn from an incomplete understanding of a study. This is a part of the internet I’d love to take back!

Another critique method I use is to examine underlying assumptions. These are not usually stated, but with a bit of scrutiny I can usually figure out the author’s baseline (agenda or assumptions). When reading something from someone who is clearly not trained in science, I also use some of my own body of knowledge to fact-check. If the author makes a statement I KNOW to be false, I’m a lot less likely to believe what else they have to say.

Thanks for raising such an important issue!
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Tanya January 25, 2012 at 8:30 pm

I actually wish I could understand a lot more about vaccinations in order to understand what the AVN was talking about half the time.

As for deciding what to believe I do my own research & check resources. Although this is probably a downfall for some people because research on the internet will provide so much information and as you said anyone can write anything and some people will believe people who sound credible or who do provide resources. So I guess it’s also how I decifer and process the information.

I think a lot of the time scientific information is hard to read and decifer for people and what people like the AVN do is talk about things in simple, easy to understand terms. I think what is needed is for science to be made more accessible for people..

Like what about statistics on the risk of death and injury from a virus versus the risk of death or injury from the vaccination for that virsus? Which is actually how I base my decision on vaccinations. But there might be other ways to present vaccination information that is more accessible?

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Matthew February 18, 2012 at 7:33 am

It is wonderful to find a place on the internet where people can speak openly about the scientific reasons for vaccination. So many popular sites, even physician centered sites like KevinMD, come under heavy fire from pseudo scientific viewpoints that try to, and succeed in overwhelming any chance at a rational conversation by barraging a given post and suffocating it.

Like all medications, vaccines can and do have some side effects but the environment of fear-mongering makes it hard to discuss these within the context of their overwhelming health benefits.

Thanks for creating a great resource of ideas for parents to introduce their children to science, as well. My daughter is only one but I can’t wait until she is old enough to flip rocks for salamanders, identify birds and learn about the world she lives in instead of being oblivious to it.

I have started to talk about the importance of nature and the outdoors on my website, PediatricianNextDoor.com, but (as my full time practice allows) I want to start creating more resources for parents specifically for reading and science. This is a fantastic website to point parents toward!
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