In his entry today, Orac asks the question "How can we physicians and scientists deal with antivaccinationism? What "frames" can we use to combat the likes of Jenny McCarthy?".
This is an excellent question. I understand exactly why Dr. Offit did not cover this in his book: I think he had a very specific remit in mind and such a question went beyond that remit. Maybe he will do a an AFP 2 or maybe he is hoping another big name in the field of vaccines or autism will step up to the plate the way he has and tackle that. I hope they do too.
My field (I am a Web developer) is that of communication. Part of my job (a very large part) is devising strategies for communication, then testing those strategies in as near to real-world scenarios as possible. I've worked for Nike, Saatchi & Saatchi, Nat West and Channel 4 to name the bigger names (oooh, get me eh? Name dropper!) . And you thought web development was just a case of farting about in Photoshop and Dreamweaver eh?
Orac is right that at the crux of the matter is the content and framing that content in a way meaningful to the average person on the street. But when we talk about communication we have two choices - old style media (the printed word, radio, TV) and new style media (newsgroups, websites, email, texting etc). And these days we are just beginning to see the emergence of a combination of the two - YouTube (i.e. Google) for example are testing ways to present live streaming video that a user could be shooting from their mobile phone or handycam.
The medical and science community need to look at the web resources they have. They are, with no offence meant, pretty pitiful. PubMed allows you to construct an RSS feed but thats about it. All the major journals (Pediatrics etc) offer static websites that charge people to look at papers. Not good enough.
For an excellent example of a group of people who have grasped - or who are at least trying to grasp - the new media available to them we could look at the online campaign of Barrack Obama (I'm British, I don't care who wins the election so please - no political rows :) )
The site has blog which is regularly posted to (not some dusty afterthought) and has some nice touches - a Flickr photoset to show 'behind-the-scenes' footage for example - with a prominent RSS link and the ability to post entries to del.icio.us, Digg etc.
'Barrack TV' showcases some nice video shot by both his team and ordinary supporters (I think).
And then there's the awkwardly named 'MyBo' which is essentially a social networking site in the manner of Facebook/MySpace/Bebo etc.
These are great innovations and show that politics in America is keenly aware of how to reach people in ways they want to be reached.
By contrast, publishing a study of great importance such as the recent Lipkin study and pushing it out via a Press Release is good - but not enough. Everyone in the vaccine and autism community heard about it yes, but we would've anyway. The people who need to be reached are new parents.
One of the things I do is have a 'Left Brain/Right Brain' Twitter account and then push site updates, site news, interesting news snippets out to that group of people. Its a very quick and easy way to connect with people. How cool would it be to see an AAP Twitter Group?
So my message I guess is that, yes the content is vital. But equally vital is both reaching people and how you reach people. Static PR releases to old media newspapers aren't enough. Static one-dimensional databases with results that lead to closed off content isn't good enough. As a collective, the science community need to come together with a media group and push their greatest asset - their expertise. Because, right now, its sitting dusty and underused.
I have to admit that there's a lot of papers I'd like to look at. I don't have time really, but even if I did, I find the paywalls pretty frustrating.
Kev, can either you or Orac think of a framing for autism that's accurate yet effective?
I've enjoyed this post and Orac's post about framing. While reading Offit's book, I realised how important actually communicating the matter rather than just talking about it is.
I get one of the CDC podcasts, it's called, "Cup of Health." I get it through iTunes. The topics change all the time. The information is explained at maybe a junior high school level. They interview different CDC experts for each podcast. I listen to other podcasts from medical journals like "The Lancet Infectious Diseases," and "Neurology" from the journal "Neurology." I'd say at least half of the information on those are accessible to the average person, with the other half being scientifically dense and requiring an understand above what I have or WAY above what I have, sometimes.
I haven't looked to see if the AAP has a podcast, they might, but it's obviously not well publicized if I haven't heard of it.
They could do a podcast aimed at parents if they aren't doing it already... and YouTube videos and they could tweet with Twitter and have a Flickr account... and send IM messages to phones, maybe?
You might consider how important live events, particularly news conferences, might be streamed to reach a larger audience. There is a website called livenewscameras.com that has a lot of content on it...much of it live breaking news but they also do connect to live press conferences from the Pentagon and other government agencies.
I think Kev makes a vitally important point.
Margaret Bauman early on published a paper that effectively dismissed the mercury-in-vaccines hypotheses. But that paper got read by a comparatively small audience, once, and that's it, except for cites from other scholarly work to come.
What's needed is for researchers and clinicians to get the message out in the ways that the broader public will encounter and absorb it.
And for them to join *autistic people themselves* in debunking the public misperception of universally dire prognosis, that drives parents new to a diagnosis into the arms of the quacks. The quacks get business because they offer hope (albeit false hope) when the legitimate clinicians offer none. The least the legitimate clinicians could do is to get up to speed *by consulting with autistic self-advocates themselves* about the range of possible prognoses and about the parenting choices that really *do* lead to better outcomes -- and then transmit the same in the advice they give to parents new to a diagnosis.