Big Brother really is watching but for the greater good
I was asked to comment on this article for SBS today but unfortunately I hadn’t read the paper before the deadline so they asked someone else.
Never mind, these things happen with journalism and tight deadlines but rather than waste the time I spent reading it, I thought I may as well bash out a quick and dirty blog post so you too can learn about the new researchs!
Published today in The Lancet Infectious Disease: “New global surveillance tool detects and monitors public concerns about vaccines in real time and could help boost vaccine uptake.”
This paper is from a group of anthropologists who are members of the Vaccine Confidence Project (which is partly funded by the Bill and Melinda Gates Foundation) who have been tasked with establishing a global surveillance system to detect emerging public opinions about vaccines.
(Proptip: to see more about the research team who did this work be sure to watch Jabbed at 20:30 on SBS, Sunday May 26th).
The reason this project was established was to monitor the spread of spurious information which can have significant impacts on public health, particularly public confidence in vaccines.
The authors cite the Wakefield MMR disaster as an example, the impact of which we are only really seeing now as measles sweeps through the UK in an epidemic largely affecting kids in the age group of 10 – 14 ie those who missed their MMR under Wakefield’s 1998 scaremongering.
The authors cite several factors that propelled the unsinkable rubber duck of vaccines cause autism into the public consciousness (and it continues to perpetuate even today), one being Wakefield’s large gob, and also the complictiy and credulity of (some of) the media.
I say “some” because of course it was the media – Brian Deer in fact – who were eventually responsible for revealing Wakefield’s work was a hoax. It’s a bit embarrasssing in fact that it wasn’t science. It also doesn’t help that it took 12 years to officially retract the paper (interestingly, this paper says 4 years in the introduction, which I reckon is wrong).
As an aside, also of interest to me is the claim by many people that The Lancet paper claimed vaccines cause autism – this is patenty untrue. The paper does not make any claims about autism and MMR, it’s claim is the characterisation of a new gastrointestinal disorder in autistic kids. It was at a press conference after the paper was published that Wakefield made the suggestion, the media picked it up and ran with it and here we are, 14 years later with more than 1000 cases of measles in Swansea. Slow clap all involved.
Another blow to public health cited by the authors was the cancellation of the HPV vaccine programme in India following the death of 4 girls (this is also covered in Jabbed). Although it was determined that their deaths had nothing to do with the vaccines, rumour and heresay spread far and wide leading to the suspension of the programme in April 2010. Monitoring of the media during this time revealed 72 percent of reports were negative.
These are two real world examples of the potential risks of allowing the spread of rumours to go unchecked and illustrate the consequences of failing to address legitimate concerns when it comes to vaccines.
Enter a monitoring system that in this study, trawled 10,380 reports from 144 countries extracted from online articles about vaccines, vaccination programmes and vaccine-preventable disease (using Google News, Google Blogs and Moreover Public Health the latter of which is a news aggregator). What the authors found (in general) was 69 percent were positive or neutral and 31 percent were negative.
Of the negative reports, 24 percent were associated with impacts on vaccine programmes and disease outbreaks, 21 pecent with beliefs, awareness and perceptions, 16 percent with vaccine safety and a further 16 percent with vaccine delivery programmes.
Importantly the tool enables researchers to disaggregate the data by country and vaccine type and monitor the evolution of events over time and location in specific regions where vaccine concerns were high. And it means that they can act quickly to dispell rumours and heresay before they cause untold damage to important vaccine programmes.
So, I like this idea for several reasons, one because it will well and truly freak out the more paranoid, conspiracy-mongering anti-vaxers who may realise that even putting alfoil on their computer will no longer protect them.
But also, because as scientists we get blamed for a lot of bad stuff that has happened in the past (see for example thalidomide) so any system that has the potential to pro-actively prevent harm, whether that be caused by real or fictional fears, can’t be a bad thing.
Read the media release here
The AVN cops a bollocking in parliament
In a positive move for consumer protection, the NSW government plans to tighten legislation which regulates alternative medicine practitioners. And what has prompted them to do this? The AVN. Here’s the proof.
Recently, I blogged about a new bill recently introduced into parliament, which is designed to tighten legislation regulating unregistered practitioners. I mentioned that this was all a result of the AVN suing the HCCC.
Well, during ongoing discussions this week, the AVN coped a bollocking in parliament, from both sides of politics. The text below comes from the Hansard (which is essentially a transcript of parliament) and the full version is here (beginning on page 1404).
I’ve excerpted the bits describing how the AVN is responsible for this change. My mate Pete has covered the speech from Dr Andrew McDonald, opposition spokesperson for health here, which states “The drivers for these changes are the 2012 Supreme Court decision in Australian Vaccination Network Inc. v Health Care Complaints Commission…” (I’ve included some of his statements throughout this post).
I also wanted to point out this statement from McDonald which I found very interesting,
“However, the New South Wales immunisation rate remains in the low ninetieth percentile, due partly to the ability of such groups as Australian Vaccination Network to muddy the waters about immunisation…”
I routinely check the vaccination statistics which are published by Medicare every quarter and the area where the AVN resides, the Northern Rivers, generally fights for last place with the Eastern Suburbs of Sydney (which destroys any preconceptions that anti-vaxers are only dirty hippies). However, I had not looked at these numbers compared to the rest of Australia, so if this number is true then it’s certainly cause for alarm for health authorities.
But I digress. I think what’s important to note about this discussion is that because the bill is supported by the government and the opposition, it’s very likely to pass and become law. This means a lot of alt med practitioners will have to clean up their act. Especially since the bill also means the health commissioner can act independently even in the absence of a complaint. It’s also a long overdue update in a time when people are frequently turning to Dr Google for health information.
As for the AVN’s role, well, Mrs Dorey has always been proud of her alleged ability to influence government and legislation. I somehow don’t think she’ll be as happy with this outcome however. Expecially since it puts the AVN well and truly in the firing line. It’s almost as if the government has designed this legislation especially for them, but we wouldn’t want them getting paranoid now would we…
Mrs Roza Sage:
“The commission has received complaints against the Australian Vaccination Network [AVN], including one relating to the parents of a four-week-old child who died of whooping cough, alleging that the Australian Vaccination Network provided inaccurate and misleading information about vaccination. This is an issue that the current parliamentary committee is concerned about. It is pleased that this amendment is being made. The Australian Vaccination Network website presents a highly sceptical view of vaccination, which could be interpreted as an anti-vaccination message. But at first glance its name would imply the exact opposite…
The Australian Vaccination Network challenged the recommendation in the Supreme Court and won …It was argued that a complaint cannot be made against a health service provider unless the complaint alleges that the health service provider affects the clinical management or care of an individual client. Basically this implies that if people take the health provider’s advice, even if it is published on the internet, they cannot be responsible for the individual’s medical outcome.
…This is not in the best interest of public health. How many times have members searched the internet and made their own judgements on what they have read? Internet advice was an issue in this case.
…This amendment will strengthen the role of the Health Care Complaints Commission and will ensure that when the commission is aware of a matter affecting the health or safety of patients, or of the public in general, the commission will not have to wait for a complaint to come to the commission but proactively will be able to investigate a complaint.
Dr Andrew McDonald, “The Australian Vaccination Network is a fervent and highly virulent anti-immunisation group. Its name and website are designed to mislead unsuspecting community members to believe that a balanced view about immunisation is being presented.”
Mr Guy Zangari: “I understand that the amendment is in response to the New South Wales Supreme Court decision in Australian Vaccination Network Inc. v Health Care Complaints Commission delivered in 2012. …The Supreme Court held that the scope of the Health Care Complaints Commission to investigate a complaint is limited to circumstances where the health service in question affects the actual clinical management or care of an individual client…
In effect, this amendment seeks to prevent the operations of the Health Care Complaints Commission being narrowed to a proscriptive function, with the power only to reprimand health service practitioners for contraventions of health-related legislation. It seeks to confer upon the commission the power to provide pre-emptive responses to health-related issues.
Dr Andrew McDonald, “..the Australian Vaccination Network is a health service provider and should accurately reflect what those views are—in this case anti-immunisation.”
Mrs Leslie Williams:
“..The Australian Vaccination Network has been the topic of much discussion during meetings of the current joint parliamentary Committee on the Health Care Complaints Commission. It publishes a website that is highly sceptical of the benefits of vaccination.
On a personal level, I, as a registered nurse prior to entering Parliament and a mother, have serious concerns about this anti-vaccination message, which puts our children and the wider public at risk. Complaints during 2009 and 2010 alleged that the Australian Vaccination Network engaged in misleading and deceptive conduct in attempting to persuade people not to vaccinate their children.
…Under section 7 of the current legislation the court found a valid complaint had not been made because no individual client whose clinical management or care had been affected by the Australian Vaccination Network had been identified. This limitation on the Health Care Complaints Commission’s jurisdiction has led to the proposed amendment of section 7 of the Health Care Complaints Act to make it clear that a complaint can be made against a health service if the health service affects, or is likely to affect, the clinical management or care of an individual client.”
Dr Andrew McDonald, “When provoked, Australian Vaccination Network’s fellow travellers can and do behave reprehensibly. The police have been called to my office on one occasion following threatening emails after I raised concerns about the practices of the Australian Vaccination Network.”
Proposed health care legislation to crack-down on dodgy claims
In what may have some unregistered health care practitioners fumbling for the edit button, a new bill was proposed in parliament yesterday which if passed could see a significant tightening of the industry.
Proposed by Health Minister Jillian Skinner, if introduced the changes will enable consumers to complain to the government not only about health information that has adversely affected their health but also information that they deem is likely to cause harm.
The proposal comes off the back of the Australian Vaccination Network suing the NSW Health Care Complaints Commission in the Supreme Court in 2011. The litigation challenged a public warning issued by the HCCC in response to a complaint made by a member of the public about misleading health information distributed by the AVN.
The HCCC deemed the AVN’s website “provided information that is solely anti-vaccination, contains information that is incorrect and misleading and quotes selectively from research to suggest that vaccination may be dangerous” and as a result directed them to publish a disclaimer indicating their information is purely anti-vaccination and should not be construed as medical advice. When the AVN refused, the HCCC issued a public warning.
But in fact, the HCCC legislation does not have the scope to accept complaints from a “member of the public” – it only covers complaints from those whose health has been adversely effected as a direct result of advice from an unregistered health practitioner. So the AVN challenged the HCCC public warning and won.
Essentially what the court required was evidence in the form of a stat dec or similar, of someone taking medical advice from the AVN, not vaccinating themselves, then contracting a vaccine preventable disease. In reality, this information is notoriously hard to come by, largely because people are too embarrassed to admit to being tricked (or perhaps they are dead). As the HCCC were unable to produce such evidence, the loophole was jumped and the public warning quashed. If the changes proposed yesterday are introduced however, this loophole will be well and truly closed.
In parliament the Hon Jillian Skinner cited the AVN versus HCCC case and said
“…(under the current law) “..There must be a specific case where an individual client is affected, thereby limiting the capacity of the Health Care Complaints Commission to act in the public interest.”
The proposed changes will say,
“The bill therefore amends section 7 of the Health Care Complaints Act to make clear that a complaint can be made against a health service if the health service affects, or is likely to affect, the clinical management or care of an individual client.”
In the age of the Internet where unregulated health information abounds online these changes would be welcomed if not a little overdue. The current HCCC act was originally drafted in 1993 and the health care landscape has changed significantly since then.
So if introduced, how is this likely to effect unregistered health practitioners such as the aromatherapists, homeopaths, nutritionists, massage therapists and iridologists? Well put simply, they’ll need to ensure their houses are in order. Any claims that are not evidence based and are deemed likely to cause harm by a member of the public will be in the firing line. And ironically this will include claims made by the AVN.
So by suing the HCCC, the AVN have instigated legislation change that opens them up for further prosecution. And even more ironically, ex-president Meryl Dorey has recently started copy/pasting a disclaimer into every piece of correspondence she sends (including Facebook comments), similar to the one the HCCC originally directed her to adopt.
It says, “This is not intended to be considered medical or legal advice. It does not necessarily represent the opinions of either Meryl Dorey or the Australian Vaccination Network, Inc. (AVN)”. (Or this is my opinion but it is not necessarily my opinion).
So we appear to have come full circle, all for the sake of a discrete disclaimer. And it’s all because of the AVN. I’m sure your fellow alt medders will thank you.
Coming into conflict: why revealing conflicts of interests really matters
Imagine if you heard about an explosive new scientific article that had been published in the peer review literature and claimed that the childhood vaccination schedule was actually dangerous.
So dangerous in fact, that there appeared to be a correlation between the number of vaccines kids received and a higher incidence of infant mortality. What a terrifying concept.
After you have scrambled to get the full text of the article, you quickly scan it to try to determine if it’s of high quality. The first place to look would be the journal itself, is it high impact? Then the authors themselves, are they well known in this field? Is their work of a high standard? Is the experimental design sound? Do they have any obvious conflicts of interest?
Huh. Conflicts of interest (COIs). A very important factor to consider.
Recently I blogged about COIs and why it is important to declare them, particularly in academic publishing. Personally, I think this should extend to any relevant forum and include everyone who is involved in the discussion (within reason and where appropriate).
On The Conversation for example, authors are required to declare conflicts of interest and on many threads, commenters also get involved, often declaring where their biases lie. This is important so we can assess the veracity of an contributor’s claims and make a judgement about how trustworthy their information or opinion is.
In science and medicine, COIs are particularly important, and indeed many academic journals insist on this information before a paper is published.
Remember “Dr” Andrew Wakefield who caused one of the largest public health scares in the history of modern medicine by claiming the MMR vaccine might be linked to autism? Well he “forgot” to tell The Lancet that he was being paid by lawyers representing autistic children to build a case against the manufacturers of MMR. He also “forgot” to tell the journal he had a patent for his very own single measles vaccines and hence by advising parents to “split the triple jab up” into single components, stood to directly financially benefit when people sort a single alternative. He also “forgot” to mention that he had developed a diagnostic kit for the condition he claimed to have discovered – autistic enterocolitis – from which he also stood to make a tidy profit.
It’s old news now, but when the paper was finally retracted in 2010, (12 years after publication) the editor of The Lancet, Richard Horton, lamented,
“In my view, if we had known the conflict of interest Dr Wakefield had in this work I think that would have strongly affected the peer reviewers about the credibility of this work and in my judgement it would have been rejected.”
I’ve previously written about Prof Brian Martin not being completely transparent about where his interests lie, but then not all journals ask for a declaration of a COI. See this recent Martin article in Health Promotion International for an example.
But the article I alluded to above, which was sent to me by Michael, is a doozy. At first glance, it’s a vaguely anti-vax article attempting to make a link between the number of vaccines on the US schedule and the infant mortality rate (IMR). The authors thesis is that despite the United States spending more per capita on health care than any other country, 33 other nations have better IMRs. And why? Well maybe because the US childhood immunization schedule specifies 26 vaccine doses for infants aged less than 1 year — the most in the world!111elevenbty
Now normally when I come across studies like this, I’ll go straight to the COI statement to see if the authors have any vested interests. Apparently not, as the COI pasted below explains,
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.
Then there’s this:
Neil Z Miller, Independent researcher, Santa Fe, New Mexico, USA
Gary S Goldman, Independent computer scientist, Pearblossom, California, USA
“Independent” researchers? Well that’s suspicious right there. (I’m kinda surprised this got past the reviewers but there you go).
Maybe this was what tipped someone off to the true identity of these “Independent” researchers, because when you view the article now, it’s a very different story. Indeed a correction has been published and I’ve highlighted the relevant bits below.
Oh right, so Gary S Goldman used to be just the Director of World Association for Vaccine Education (WAVE). I’d not actually heard of them before, but with the url, novaccine.com, I guess you can figure out what their agenda is. As for the Think Twice Global Vaccine Institute, anyone want to have a guess what they think about vaccines? Have a go in the comments!
And notice who paid the open access fee? None other than the NVIC, the large US anti-vax organisation headed up by Barbara Loe Fisher.
If I were the editor of this journal, I would have been less lenient on the authors for the omission of such important affiliations. I would have retracted the paper, because this is simply dishonest. What’s that phrase? Lying by omission? Yeah that.
So what do you think about this article now? Now that you know the NVIC paid for the open access and that both the authors have anti-vax connections, does this change your view of these findings? Well, it certainly does mine.
This is why declarations of COI are so important. And why I question the motives of those people who don’t declare them and claim they don’t need to. Because, in my mind, it implies they’ve got something to hide. And in this case, these authors quite clearly did.
PS: for a thorough critical analysis of the article see David Gorski’s takedown here.
Tipping the scales on false balance
False balance is used to describe a perceived or real media bias, where journalists present an issue as being more balanced between opposing viewpoints than the evidence actually supports.
“Anti-vaccination is a fringe opinion. For every 5 doctors who oppose vaccination there are 95 who support it. We are not obliged to provide equal time and space to unscientific and dangerous viewpoints – The Project.”
False balance has long been a problem in the mainstream media particularly when it comes to stories concerning science and medicine. It’s a curious occurrence since most journos will scoff when you propose they invite a flat earther on to a story about circumnavigating the globe or a holocaust denier in stories about World War II. But the parallels when inviting an anti-vaxer onto a story about vaccination for the sake of “balance” somehow escapes them.
Of course anti-vaxers exploit the idea of balance by claiming that there are two sides to every story and disseminating the idea that there is a “vaccine debate”. Well, in the interest of saving time and going over old ground, there is no debate. The science is in. Vaccines work and the benefits far outweigh any associated risks.
Before anyone bothered to challenge the idea that false balance was bad m’kay, the anti-vaxers got virtually a free ride in the Australian media. The AVN, fronted by Meryl Dorey (who has recently retired) was a media darling and the go-to person for just about every story concerning vaccination. Juxtaposed alongside highly qualified experts in immunology and medicine, this lent legitimacy to her “opinions” and elevated her to the heights of expert, despite the fact that she has absolutely no qualifications, apart from a “brain”. When she was described on the program for the Woodford Folk Festival as “Australia’s Leading Expert in Vaccination” I didn’t see her falling all over herself to correct this misconception.
However, something has happened in Australia over the last few years that has been very encouraging. Slowly a shift away from false balance has started, largely due (IMO) to a tireless campaign by a bunch of concerned citizens who fall under the umbrella of SAVN.
Why is this important? A recently published paper highlights the reasons why false balance can be so dangerous. Using the consistently reported but thoroughly unsinkable rubber duck of an autism/vaccine link, Dixon and Clarke investigated how this reporting style influences judgements of vaccine risk.
They randomly assigned 320 undergraduate students to read a news item presenting either claims both for or against a vaccine/autism link, a purely anti-vax “vaccines-definitely-cause-autism” article and a “there is no link” article.
Unsurprisingly, they reported that participants who read the article saying vaccines cause autism indicated they would be less likely to have their children vaccinated in the future.
This observation is supported other research showing that “viewing an anti-vaccine website for 5-10 min increased perceptions of vaccination risks and decreased perceptions of the risks of vaccine omission..
“..more importantly viewing an anti-vaccine website significantly decreased intentions to vaccinate, which persisted 5 months later and this translated into parents having their children receive fewer vaccinations than recommended.”
But what was even more surprising and shocking about the findings of Dixon and Clarke, was that the balanced article produced a stronger effect than the “link only” article.
Let me just repeat that in case you missed it.
“The false balance article citing a possible link between vaccine and autism left participants feeling less confident about the safety of vaccines than the ”vaccines-definitely-cause-autism” article.”
The authors suggested the reasons for this may be due to false balance eliciting a stronger perception that experts are divided, or that experts truly were uncertain whether vaccines caused autism.
Thus, the study suggests false balance reporting with respect to vaccine safety lowers people’s intentions to vaccinate their future children more so than even straight up anti-vaccine reporting.
The issue of false balance was covered extremely well on a recent episode of Australia’s media watchdog programme, Media Watch. The segment under scrutiny features Meryl Dorey commenting on a measles outbreak and coincidentally quotes her saying,
“All vaccinations in the medical literature have been linked with the possibility of causing autism, not just the measles mumps rubella vaccine…” (This. Makes. Me. So. Mad. Watch the clip if you dare)
I’m told that this show is required viewing for all journos and getting a mention is a black mark against your name, such is the power of Media Watch. The story (see below) is a smackdown of a report which featured on WIN news and was later the subject of complaints to the communications regulator.
“..Dorey’s deceptively named Australian Vaccination Network is in fact an obsessively anti-vaccine pressure group that’s immunised itself against the effect of scientific evidence.”
Some have suggested this functioned as a warning to anyone else in the media should they foolishly decide to go the false balance route. There are rumours that some media outlets in Australia have a complete ban on talking to Dorey (and it will be interesting to see if this still stands now that she is no longer president).
In my own experience, I have recently started telling media if they plan to do a “balanced” story then they will not get my participation. Interestingly, when I was recently asked to go on The Project to talk about The Academy of Sciences Immunisation booklet, I asked if they planned to also have an anti-vaxer. The producer said they had indeed asked someone who had refused to participate unless they could be interviewed live.
As far as I’m aware The Project pre-records all their crosses to allow for editing but the anti-vaxer didn’t want to be made to look silly in the editing (oh yes, I see the irony). The producer told me it was ridiculous that they would expect special treatment when everyone else is pre-recorded so they were not included in the show. Their loss I guess. I mean The Project is prime time, national and watched by a huge number of people so it’s great exposure for your crack-pot ideas. Wait… oh yeah.
After appearing on The Project again last Wednesday (video here) to talk about Melanie’s Marvellous Measles, I was pleasantly surprised to see this thread on the show’s Facebook page addressing precisely the issue of false balance.
After all the work we have done in an effort to educate the media about the dangers of false balance in vaccination, perhaps it is finally paying off. And given the latest research it’s especially encouraging to see a prime time, mainstream, commercial television show take a responsible public health stance.
Congratulations to The Project and I’ll certainly come back on anytime if you want me. Editing included.
UPDATE: January 28, 2013. It seems Karen Johnston has now deleted the thread she started on January 10 which several hours ago was up to 1000 comments. Here is the last screen shot I got, where she is is scolded by an anti-vax mother. Perhaps she realised she was revealing just a little too much crazy.
AVN tumbles to the bottom of Google Australia
As a follow up to yesterday’s post on the AVN and the Internet, I was alerted to a change in Google rankings today.
Hat tips to Dallas Warren and Chris Higgins for this. The AVN’s Google.com.au ranking has fallen from #2 – where it sat for years – to #9. Below is a screen shot taken around the 15th November, 2011.
Here is a screen shot of Google.com.au today.
I have no idea when this happened, but it was spotted by Chris Higgins today. He has been interested in following the progress of the Big Pharma hack on the AVN site as he has previously tried to remove it from another WordPress site, but instead had to resort to deleting the entire affected site. There is some discussion about how difficult it is to get off a site here.
Chris also pointed out that when you search within the AVN site, nearly all the pages are now infected.
And Dallas Warren noted that when you use the new preview option in Google you see a whole bunch of hacked text.
Two things have likely contributed to their fall in ranking, one is no doubt the hack (which has been there since April 2012) but also their poor WOT rating that means their site is blocked when linking through Facebook.
Why does this matter? Well it matters a lot because evidence suggests that online health information seekers examine the first 10 search results 97.2% of the time. Even more insteresting are studies showing that Wikipedia ranked among the first ten results in 71–85% of search engines and keywords tested. And based on its search engine ranking and page view statistics, the English Wikipedia is a prominent source of online health information compared to the other online health information providers studied. And we know what the AVN (well at least Prof Martin) thinks of the AVN Wiki entry.
We know that even spending as little as 5 mins on an anti-vax website can influence parents’ decisions months down the track, and that parents who exempt children from vaccination are more likely to have obtained information from the Internet than parents who have their children vaccinated.
So taken together, if the AVN were to fall off page one of Google completely and health information seekers instead saw the Wiki page (which we know the AVN don’t like) there would be a lot less misinformation getting out to parents. This is good news indeed
PS: It hasn’t escaped my attention that SAVN is ranked even lower than the AVN on Google.com.au! We have some work to do.
UPDATE: 01/02/13. The AVN’s website, located at avn.org.au, finally came back online this afternoon (at approximately 1 pm) after approximately 6 days being offline – it was pinging a 403 error. I decided to do a Google.com.au search for “vaccination” to check if this outage had effected their ranking. Well, it has. Big time.
The site has gone from page 1 where it was a month ago. So my friend Carol searched and searched and searched and the first mention she could get of avn.org.au was page 32 of Google. And this is not even a direct hit for the site. See the screen shot below.
Carol then Googled “Australian Vaccination Network” and not even that brings up their site on page 1 (it does get their Facebook page).
Wow. And would you look at the top hit – the Wiki page which they despise.
Why is this so important? Because over 80% of people use Google as their preferred search engine and 97% of people do not look past page 1. How the hell the first reference to the AVN fell to page 32, I’ll never know. And I don’t even know on what page the site eventually turns up on because we gave up after page 35. But it seems that the AVN have broken the Googles machine. And this means less people will be exposed to their misinformation and scaremongering. And this can’t be a bad thing.
Further update: Chris Higgins did the search below for me (click to embiggen), showing search terms and where the AVN comes up across 3 search engines. It’s a bit of a worry when you Google your own name and it comes up 20th (according to this search – we were unable to reproduce such a high result as detailed above). Somebody broke the Google machine!
Skirting around the evidence to pick cherries.
“Cherry picking, suppressing evidence, or the fallacy of incomplete evidence is the act of pointing to individual cases or data that seem to confirm a particular position, while ignoring a significant portion of related cases or data that may contradict that position.”
Brian Martin is an academic at the University of Wollongong who was trained as a theoretical physicist but now works as professor of social sciences. You may know him better for his PhD student Ms Judy Wilyman whom I have blogged about before.
In recent years Prof Martin has published a bunch of articles on the AVN. Given the number and the approach he has taken, I describe him as sympathetic to their cause. Indeed, he shares a number of common interests with the AVN, as described on his page on Experts Guide including, “..dissent; free speech; whistleblowing; whistleblowers; …repression; fluoridation; origin of AIDS (Dorey is an AIDS denier which is not entirely the same thing); and vaccination.”
Prof Martin’s articles primarily focus on “attacks” on the AVN perpetrated by the Facebook group, Stop the Australian Vaccination Network (SAVN)”. His most recent publication, “Online onslaught: Internet–based methods for attacking and defending citizens organisations” was published in the Internet journal, “First Monday” on December 3rd, 2012.
A conflict of interest?
Although Prof Martin has previously admitted to being a financial member of the AVN, he does not declare it in this recent article (or his previous publication). The text describes him as,
“…(a) professor of social sciences at the University of Wollongong, Australia. He is the author of 14 books and hundreds of articles on scientific controversies, dissent, war and peace, democracy and other topics.”
He also doesn’t see this lack of declaration of financial support as a conflict of interest, defending his previous aversion to declaring it in a comment on a blog,
“In joining the AVN to obtain its magazine, I did not receive any special benefits nor make any commitments restricting my ability to comment as I wish. This is not all that different from the situation of a book reviewer receiving a complimentary copy of a book from the publisher: this small favour does not guarantee a favourable review. COIs are not declared in such circumstances.”
I guess we could argue this point until the cows come home, but it doesn’t hurt to declare that you provided financial support (in the form of a membership) to the body you are defending, especially when you are essentially seeking to demonise the attackers and generate sympathy for the AVN. It’s a basic rule of academic publishing so readers can make an informed decision (funny, where have I heard that phrase before..) about where your biases lie in case they may influence your position on any given subject.
Secondly, this also might be a valid argument were it not for the fact that the publication of the AVN, “Living Wisdom” is available via Document Delivery from the UoW library, for free.
In any case, I disagree it it not an issue to declare this COI. Others agree with me, Prof Martin does not. But I digress..
Cherry picking the evidence to support your argument.
I’m trying very hard to be reasonable here, but one section of this article has me puzzled. Under the section describing seven methods used to attack the AVN by critics, Martin cites the Wikipedia entry on the AVN and I will address these claims in two parts.
“Attack method 4: Monopolise Wikipedia entries
There is an extensive Wikipedia entry on the AVN, much lengthier than for most organisations of similar size and influence. For example, the Wikipedia entry for Whistleblowers Australia, which has a public profile roughly similar to the AVN’s, is quite brief and incomplete….For example, there is extensive reference to a warning about the AVN from the Health Care Complaints Commission….”
Firstly, Wiki is crowd-sourced and crowd edited so if some articles are bigger than others, it’s unlikely an indication of a conspiracy, rather that someone(s) has taken a particular interest in a topic. The entry on the HCCC was an important part in the AVN’s recent history, especially given they won a Supreme Court challenge against them, so I see no reason why it should not constitute an extensive reference.
“When opponents take over a Wikipedia entry, one avenue for resistance is counter–editing. Indeed, Wikipedia depends for its accuracy on vigorous engagement in contentious areas. However, SAVNers seem to have the numbers, energy and resources sufficient to overwhelm any attempt by AVN supporters to modify the entry. Another option, seemingly adopted by AVN members, is simply to ignore the Wikipedia entry and to concentrate energies on the online forums it can control, especially its own Web pages.”
This comment suggests that because the AVN Wiki entry is not flattering, it must have been overtaken by opponents and therefore it must be wrong. Well not necessarily so. Just because the AVN (and apparently Prof Martin) don’t like the entry, doesn’t make it automatically spurious.
Despite beliefs to the contrary, Wikipedia is actually pretty reliable. A 2005 article from Nature reported it to be on par with Encyclopedia Britannica with respect to serious errors (i.e., minimal). Indeed, Prof Martin himself states,
“…Wikipedia depends for its accuracy on vigorous engagement in contentious areas.”
And such “vigorous engagement” occurs in the form of editors watching posts and correcting spurious information should it appear. Thus, if people post inaccurate information it can immediately be corrected by those working to keep the article accurate and all this is tracked in the Revision History which is accessible to everyone.
So even if the AVN editors were “overwhelmed” by the SAVNers, the nature of the self correction process predicts that eventually any spurious information would be removed.
Further, evidence suggests that, “42% of damage is repaired almost immediately, i.e., before it can confuse, offend, or mislead anyone…” And if SAVN continued to vadalise the entry, then a lock can be placed on the page to prevent further edits. (Which is conspicuous by its absence, indeed the most recent edit was on December 21, 2012).
Further to the reliability of Wikipedia,
“An early study conducted by IBM researchers in 2003—two years following Wikipedia’s establishment—found that “vandalism is usually repaired extremely quickly — so quickly that most users will never see its effects”and concluded that Wikipedia had “surprisingly effective self-healing capabilities”.
Further and with respect to the opinions of experts on the reliability of Wikipedia;
“An empirical study conducted in 2006 involving 55 academics asked to review specific Wikipedia articles that either were in their expert field (group 1) or chosen at random (group 2), concluded that “The experts found Wikipedia’s articles to be more credible than the non–experts...”
Collectively, these data suggest that if SAVN were continually entering spurious information into the AVN entry it would eventually be removed and the troof would rise to the top! Instead the opposite appears to be the case according to the Review History.
Evidence that AVN supporters have attempted to edit the Wiki entry
Another point made my Prof Martin is that the AVN may have chosen to ignore the Wiki entry to concentrate on controlling their own fora. May I state from the outset that they’re not doing a particularly good job of the latter, given evidence showing their own website has been hacked since at least April 2012, and now redirects to Direct Pills dot com.
The other point is that an AVN supporter has tried to edit the page as recent as December 2011. Prof Martin’s article was submitted for consideration for publication on April 7, 2012. Edits were made to the AVN Wiki entry on December 17, 2011 – well before he submitted his manuscript the first time by someone named “Potatomasherjim”. Who is this “Potatomasherjim”? Well a Google search leads to someone called Annie Dorey. Yes, that’s right Meryl Dorey’s daughter.
It’s easy to see the edits made by Potatomasherjim in the “view history” section of the AVN entry but I’ve screen shotted them below.
The first edit was made at 03:46 on December 17th, 2011 and was reversed at 04:04 by Gillyweed, which is consistent with evidence showing 42% of damage is repaired almost immediately.
The edit by Potatomasherjim is the addition of the following text;
“They believe that “good health comes from proper nutrition, exercise, a loving environment and family and the use of healing from many modalities including allopathic medicine when it is called for.”
The next edit was made at 04:29 but was removed by 05:00. Note that it took HiLo48 31 minutes to reverse the edit and explain why (see below),
“No. That makes a fringe POV organisation sound like its mainstream. I laughed when I saw the claim of science in there.”
(For the record I have no idea who HiLo48 or Gillyweed are, so any assertion that they are an “SAVNer” is not confirmed).
So how do I know that “Potatomasherjim” is Annie Dorey? Well I can’t be 100% sure but it’s a pretty unusual pseudonym, unusual enough to pin it down to one person maybe? Well maybe. Indeed, if you Google it, it leads to a Facebook page that belongs to Meryl Dorey’s daughter, Annie.
In conclusion, SAVN are poopy-heads.
The thesis of Prof Martin’s claims seem to be that SAVN are big meanies who have somehow gained control of the Wiki page to make the AVN look bad. But the evidence that I have presented for the accuracy of Wikipedia and the robustness of the self-correction process make these assertions unlikely. Whilst I recognise some of the names on the revision pages, there are many I don’t, so it’s not possible to say unequivocally that SAVN DID IT! Similarly, Dorey blames her poor WOT rating on SAVN but the majority of us didn’t even know WOT existed before she was complaining that we DID IT!
I have also presented evidence of a recent edit, possibly by Meryl Dorey’s daughter Annie (or someone using her online identity), as an attempt to make the AVN look less like “lunatic fringe dwellers”. No mention of this is made in Prof Martin’s article, but even more importantly the accuracy of the information on the Wiki entry is not challenged. Why not?
Is it because it is accurate? Is it because Prof Martin’s approach was to divert attention from the validity of the entry and direct it to who put it there in an attempt to discredit the page entirely? Did he fall victim to cherry picking evidence to support his thesis that SAVN are big bad meanies? Whatever the reason, it strengthens the case for declaring conflicts of interest when critical evidence is excluded. Because when you know that someone is a sympathiser with an apparent agenda, then you are in a better position to make an informed decision about what you read. And we all know the AVN fully supports that.
NSW Government orders the AVN the change their name or face closure.
Big news in Australia on Friday night as a news article appeared describing an order by the Department of Fair Trading ordering the notorious Australian Vaccination Network to change their name or face deregistration.
See the media release here
The move follows what has been described as “numerous” complaints from both the public and the Australian Medical Association that the name is misleading to the public and confuses parents when searching for reliable information on vaccination.
Several of these instances have been reported publicly including a misunderstanding by The Australian College of Midwives’ who mistakenly sent out invitations for an AVN seminar to all its members. In a story published in Medical Observer magazine, the Executive Officer, Ms Ann Kinnear, said; “Subsequent information that’s come to hand has made me realise it’s a mistake.” She was unaware until her membership informed her that the AVN was an “anti-immunisation lobby”.
In a media release in July Dorey said; “It is not up to a third party to say what we can and cannot call ourselves. Will they be coming for our books next?”
In 2009, the Australian Skeptics, with sponsorship from Dick Smith, took out an ad in the Australian to warn parents not to look to the AVN for health information. During the flurry of publicity that ensued, Dick Smith said.
“They are actually anti-vaccination, and they should put on every bit of their material that they are anti-vaccination in great big words. They have every right for that belief but they should communicate it clearly so people are not misled.”
In 2001, The Minister for Health. The Hon. Geoff Wilson MP, (Qld) and the Qld Chief Health Officer issued a statement about the AVN saying; “… fringe groups like the misleadingly named ‘Australian Vaccination Network’ are wrong to discourage people from getting vaccinated.”
Parents commenting on the Stop the AVN Facebook page share similar stories;
“Dear Meryl, I was attracted to the AVN several years ago because the name suggested that you might be a reputable source of information about vaccination (I was preparing for an overseas trip). I found nothing of the sort on your site (neither did the HCCC, as I recall). I was indeed misled and deceived by your name. And I’m not the only one.”
Of course the AVN have good reason to hide their true agenda. After all, what parents would seek information from the Anti-vaccine Network. But if you scratch the surface of their slick, “pro-choice” website you quickly find an anti-vaccine agenda.
Never has this been more obvious that in the T-shirts they sell emblazoned with “love them, protect them, never inject them ”. Or the book “Melanie’s Marvellous Measles ” which is supposed to educate kids to embrace infectious diseases. I know right….
And then there was this comment from Meryl Dorey just two days ago to her Yahoo list which said:
“…Just like there is no evidence that vaccination prevents most diseases. If there is evidence, I’ve yet to see it.” (December 13th, Y! List).
But in recent years things have changed for the AVN, and the media has been challenging them on their alleged “pro-choice” stance. Listeners may recall a radio segment with the Two Murrays where they suggested Meryl was anti-vaccine and she screeched “I AM NOT!”. Yet, when journalists as the question “so which vaccines would you recommend?” the silence is deafening.
A twelve month investigation by The Health Care Complaints Commission also deemed the AVN website to be anti-vaccine and misleading;
“The Commission’s investigation established that the AVN website:
• provides information that is solely anti-vaccination
• contains information that is incorrect and misleading
• quotes selectively from research to suggest that vaccination may be dangerous.”
Even more recently the AVN has been referring to themselves as “Australia’s vaccine safety watchdog”, which of course they’re not but it certainly makes them sound more credible.
The practice of anti-vaccine groups using misleading names is not new. In the US there is the National Vaccine Information Centre run by Barbara Loe Fisher (NVIC). In New Zealand there is VINE or Vaccination Information Network.
It took Meryl longer than expected to bash out a blog post about this latest “threat to free speech” and “suppression of information”, but she didn’t disapppoint. She suggested that if the AVN were to change their name then why can Greenpeace continue unabated?
“Greenpeace is not green, nor do they go around looking for peace, therefore, would the Department tell them to change their name too?”
“And what about the cancer council? Won’t people think they are pro-cancer?”
But in contrast to her usual rabid foaming blog post, today’s just seems defeated and tired. In addition, the AVN recently spent a wad of cash and substantial time migrating their website to WordPress only to have it infected with a CHEAP PILLS hack. Yesterday I was not even able to reach their site as I was being redirected to Direct Pills from three different browsers. This morning the entire site was pinging 403 errors. This also raises issues of privacy as they have a shop and an adverse reaction reporting form, both of which contain personal information.
The cracks are beginning to show for the AVN and Meryl Dorey. The Dept of Fair trading have indicated that they can cancel the AVN’s registration if they do not comply by February 21st, 2012.
But not only does this mean they lose their “incorporated” status, they will also be subject to an audit, their assets seized and distributed as the Commissioner sees fit (and that does not incude to the committee). So this is a very serious matter indeed. The AVN has a right to appeal and a Tweet from Tracey Spicer today indicated that they already have.
However, with the missing financial statements from 2011 and the already suspicious looking ones from years prior to 2010, this could be a very interesting exercise indeed.
In any case it seems Meryl’s fans have missed the point of the reason for the name change – that it is misleading – and have offered some suggestions for a new one,
“Vaccination Troof and Transparency Network”,
“Australian Vaccination Information Network”,
“Australian Vaccination Choice Network”,
“Australian Vaccination Information Network”, and my personal favourite
“telling the truth about things that big pharma whores and useless media will not.”
Of course she would do well to retain the acronym “AVN” as a way of keeping her domain name, so I’m suggesting the Anti-Vaccine Network.
Last time Meryl had the government come down on her, she took them on and won. But this time, well things don’t look so cut and dry. Methinks this could be the end for the AVN and I don’t just mean the name.
Come out from behind that bench and KISS*.
How can scientists communicate to the public if they can’t even explain their work to each other?
I recently attended a multi-disciplinary biomedical sciences conference that was designed to encourage collaboration and cross-pollination of ideas. Scientists from a wide variety of disciplines were represented including cancer research, heart disease, MND (that’s me), mental health and, more.
The day was structured around a plenary, short talks and, a poster session with prizes awarded accordingly. I had not attended this conference before but I read a lot of science outside my area of specialty and therefore I like to think I have a fairly good understanding of other areas of biomedical science.
So I was extremely disappointed to find that I had difficulty in following many of the talks because they were too technical or laden with jargon and lacked a big picture explanation. This is not to say they were of a poor standard, I’m fairly sure they were exceptional, it’s just that I could not have walked from the room and given you a synopsis of what was said, because the message was not clear. And I have a PhD in cell biology and more than six years of research under my belt.
So it got me wondering, with all the pressure on scientists to communicate their work to the public and “come out from behind the bench!”, we have a long way to go if our colleagues don’t know what the hell we are going on about. And it seems someone else was on the same page as me since the best student talk was awarded to a presentation which was clear, concise and succinct.
By contrast, another talk delved into the fine details of the methodology, and whilst I’m certain it was very impressive, the outcomes of the research were completely lost in the detail. The thing is, during a ten minute talk at a generalist conference, I don’t want to know the precise details of the primer design, the exact engineering behind the fluorescent microscope, or how many technical officers it took to change the light globes. If I do require these details, I can ask the researcher afterwards or read the paper if the results are published.
“What’s the point of research if no one reads it? So it’s sensible to do what you can to let people know about it,” Professor Simon Chapman, Uni Sydney School of Public Health.
I’m not suggesting that talks be delivered in layman’s terms or, that the science should be “dumbed down” – I’m suggesting the information should be accessible and that jargon should be kept to a minimum and ideally reserved for specialist conferences.
I’ve been translating complex science into simple language for over eighteen months now in my role as a science communicator, and it is certainly a challenge to do this without misrepresenting the science. Indeed this is the hardest part of the process and why so many of us complain about mainstream journos messing up our work, but it can be done and when it’s done well it’s a win-win for everyone.
With the increasing accessibility of the web, there are now plenty of places where researchers have the opportunity to describe their work for a larger audience. For example blogs (either your own, a guest post on someone else’s or those attached to specialist scientific journals), websites such as Australia’s “The Conversation”, or as an interviewee on one of the many science podcasts, amongst many others.
I agree with Professor Simon Chapman from the University of Sydney School of Public Health who said, “I just can’t see the point of doing research if no one is going to read it”.
He has conducted experiments where he has made several of his publications available to download via Twitter. A book on PSA tests for prostate cancer called “Let Sleeping Dogs Lie” had sold 200 hard copies but was downloaded 7000 times.
“So what?” you might say, why wouldn’t people download a free book? But even a dry, non-peer reviewed manuscript entitled “Policies and Practices of Australian Universities on Competing Interests of Academic Staff” was downloaded 242 times when Tweeted. (This method may not be applicable to published papers as it breaches copyright of the journal in most cases).
Further, Paul Knoefler from Nature News Blog says “Savvy scientists must increasingly engage with blogs and social media. Even if you choose not to blog, you can certainly expect that your papers and ideas will increasingly be blogged about. So there it is — blog or be blogged.” I am acutely aware that many of us have neither the time or the inclination to do so. And that’s perfectly fine. Personally, I enjoy the immediacy of talking and blogging about my work as feedback comes quickly and I reach a much larger audience than I ever would behind the pay-wall of an academic journal.
But if we do find ourselves at a cross-discipline conference, we should be mindful that omitting complex detailed information without detracting from the message is a much more effective way to convey the science. There’s nothing more satisfying than people taking an interest in your work – especially when you’ve slaved behind a bench for years to get that one pretty graph – which they can’t do if they don’t have a clue what you’re saying.
There are multiple pressures on researchers including teaching, supervising students, publishing papers, not to mention months of writing grants and grant rebuttals, it’s a wonder we have time to talk about our work at all. But if we do come out from behind the bench and talk only in jargon, then we’re not reaching anyone and there’s not much point in that.
*KISS = keep it simple stupid
More hollow legislation from the TGA
Consider this scenario. You’re given a really complicated and challenging assignment to complete that will require a significant investment of time and money. But the chances that you will ever be asked to produce it are approximately 20%. Would you bother to complete it? Would you take the risk?
Such will be the conundrum facing suppliers wanting to sell complementary and alternative therapies (CAM) in Australia if new draft legislation from the Therapeutic Goods Administration (TGA – the equivalent of the FDA) is approved (more on this later).
This is one of several recent proposals which if introduced, could see significant crack-downs in alternative medicine in Australia.
With the recent budget came news of a possible thirty million dollar cut to private health fund rebates for complementary and alternative medicine (CAM). On the chopping block are homeopathy, aromatherapy, ear candling, crystal therapy, flower essences, iridology, kinesiology and naturopathy.
Now wait just a second, the government pays for ear candling and crystal therapy?! Well indirectly yes, if your private health fund covers it. Last year private health funds paid ninety million dollars to alternative medicine practitioners with the government kicking in thirty.
This recent announcement follows a leaked statement from the NHMRC on homeopathy which declared “(it is) unethical for health practitioners to treat patients using homeopathy, for the reason that homeopathy…has been shown not to be efficacious”. Well, no surprises there. After 200 years and more than 200 clinical trials, there is still no good data that homeopathy is any better than placebo (see “How does homeopathy work here). And considering that homeopathic principles predict it is just sugar or water we would expect no other outcome.
Perhaps the Australian Government forgot to take their warm and fuzzy pills, because now the TGA has got its cranky pants on about CAM on the Australian Register of Therapeutic Goods (ARTG). To understand the significance of this you need to understand the difference between Registered drugs and Listed drugs (bear with me, Dear Reader).
There are two arms to the ARTG, Listed products are considered low risk, are identified with an “AustL” number and include things like complementary medicines (e.g. herbal, mineral, vitamin and homoeopathic products), sunscreens and ear candles.
Registered products are high risk (because they have a known effect), are identified with an “AustR” number and include prescription drugs and painkillers.
Under the current system, you can get your CAM product stamped with an official looking AustL number by simply applying online. You should hold evidence that your product works – but you need not present it upon submission – and this is a critical factor. The story for AustR products is very different since they are considered high risk, simply translated to “they work”.
But now the TGA has drafted a new document that redefines what constitutes evidence for listed products and the CAM industry is crying the end is nigh! Under the proposed changes, applicants must now complete an expert report, consisting of a review of the scientific evidence going back at least ten years and sourced from Medline and at least one other database. According to the draft document; “.. an applicant….must provide an objective report that contains a comprehensive analysis of the data relating to the proposed listable indication…”
The TGA is also not shy about what type of studies they consider acceptable, “Studies with increased methodological rigor (are able) to produce evidence that more closely reflects the health benefits associated with a particular intervention.” And even further, the studies must provide evidence for your specific claim, such that if you are claiming weight loss, studies that describe body reshaping or improved muscle mass are not acceptable. So, “Indications must not, indirectly, or by implication, lead consumers to believe that the medicine will assist in a health benefit that is not explicitly supported by the balance of evidence.”
This is a gargantuan and time-consuming task and testament to this the TGA recommends applicants seek the assistance of a librarian.
But the real reason why some CAM sponsors have their knickers firmly in a knot probably lies with the TGAs definition of what constitutes an Expert. “An expert is defined as: a) a tertiary degree (of at least three years duration) in a health profession; and b) at least one of the following i) a course in critical appraisal or biostatistics from a tertiary institution (this could include a short course or a component of a masters); or ii) a PhD in a scientific or health related discipline; or iii) a specialist medical qualification.
So there’s the rub. Not only do you need to compile a thorough report detailing the evidence for your product, but you also need to convince someone with a lot of letters after their name to do it for you. (Mind you, I can name a homeopath and chiropractor whom fit the definition of an Expert and you’ll always find a doctor willing to support quackery, see Dr Joseph Mercola and Dr Oz).
By now you’re probably thinking what a great initiative from the TGA! Considering they’re known as a paper tiger for their lack of enforcement, this is a significant step forward! Until you realize there is one giant gaping hole in this proposal. The Expert report is not required to be submitted with the application for listing. Applicants must state they have it, but they only need to produce it if they are audited and the chances of that are about as great as the number of molecules that remain in a 12 ½ C dilution of homeopathy. Around 20%.
I recently submitted comment on behalf of Australian Skeptics Inc, regarding this obvious omission to what would otherwise be a significant improvement in the regulation of CAM in Australia and we await a response from the TGA.
Hold your breath folks or the paper tiger may blow away.