Dr Ben Goldacre
Ben Goldacre is a medical doctor, academic, broadcaster and best-selling author who specialises in ‘bad science’ from drug companies, the media and quacks. He is perhaps best known for his book, and regular Guardian column, ‘Bad Science’ and it’s follow up ‘Bad Pharma’. He is currently heading up the AllTrials campaign, a quest for drug companies to publish the results of all clinical trials.
The absolute kernel of science is saying ‘Show me the evidence, let’s talk about the problems in your beliefs’.
On scientific areas of interest
Well, I have lots of different areas of interest. I was a doctor and I saw patients for a long time and then I slipped sideways into epidemiology, which is the science of how we know whether something is good for you or bad for you. So, what are the risk factors for cancer or heart disease; how do we prevent those problems? And I also have this hobby which is talking about problems in science. Public engagement is something everybody says that they’re really enthusiastic about because that’s a very kind of positive, happy, Catholic thing to say. But they often want public engagement to be about telling everybody very triumphantly about the answers of science, about how fantastic science is or about brilliant things it’s achieved. But I think the interesting bits in science are the areas that are contested and, actually, when you want to make a story out of science you can do that with historical biography, or you do it with the story of the battle over the actual ideas. So, why is it that some people say that MMR causes autism in some people and some people don’t; why is it more interesting really that some people think that, ah, cancer is associated with low-level radiation from working on a submarine base? How do you unpick the data on those questions? So those kinds of battles and fights I’ve tried to take to the public and inevitably that takes you away from kind of trivial, neutral, ‘rah, rah, everything’s fantastic’ science and also away from the kind of modest, sober, gentlemanly disputes and into violently contested territory. Like, for example, should the pharmaceutical industry be allowed to hide the results of clinical trials?
On being ‘Ben Goldacre’
Why do I do what I do? I suppose…so my dad is an epidemiologist and my mum was a pop singer and you could argue that I am a stage epidemiologist in some respects. I think I…I mean I definitely always wanted to be a scientist, and I’m sort of fourth generation nerd in the family, so there’s a lot of familial stuff there.
Epidemiology is…so I went into medicine thinking that I was mostly interested in neuroscience and then I went into psychiatry after, you know, sort of basic medicine and surgery stuff, thinking firstly, this is – so there were three reasons why I did psychiatry and two of them were good and one of them was a bit bad – firstly, this is the single biggest area of spend for the NHS out of all of the disease areas, which is amazing, it’s bigger than heart disease, bigger than respiratory, bigger than everything, psychiatry. Secondly, it is the most challenging area in which to apply the basic principles of evidence based medicine and it sort of crosses over with social and policy issues as well as, sort of, just giving a pill and people get better: what is better? And then, lastly, I had a consultant who said that the secret in medicine was to find a group of patients that everybody else found it really hard to deal with but who you actually quite like, and he said ‘For me it was Scottish alcoholics so I’m a gastroenterologist’. And actually people with, um, schizophrenia and addictions, I…I genuinely enjoy their company.
But then after doing that for several years in very deprived parts of London I realised that, um, it’s very difficult to do good. And I think that a lot of doctors who end up in epidemiology or public health roles go down that path of sort of going, ‘Actually, I’m not so sure that everything I’m doing here is brilliantly useful and maybe it’s time to take a step back and look at structural issues and see to what extent they can be improved’. So that’s how I ended up doing epidemiology – or ‘epidemiholiday’ as we referred to it when we were at medical school – but it’s the most important thing, the bedrock of all of medicine. And shouting about it in public just sort of comes naturally.
On top of that I don’t think I’m fearless, I mean I think I’m proportionately goal-oriented in taking people and problems on, but, I mean you shouldn’t sort of pyschoanalyse yourself and I’m certainly not the type to do that but…Phil Hammond at this event recently, where it was head to head me versus the head of the ABPI in the Royal Institution, which is this sort of Mad Max arena with people arraigned up in front of you. And it was nothing but pharma people because it was an event organised by Pharma Times, who charged £230 for a ticket ridiculously, and they were all sort of screaming and shouting which I find very odd because…Bad Pharma, really, what have I written, I’ve written a very straightforward description of very well-documented methodological problems in medical research that are, many of them are, core curriculum in medical school you know, problems with trial design, publication bias, you’d fail medical school if you didn’t get this stuff. But to mention it in that room gets people, literally, you know…a lot of pointed fingers, a lot of shouting, you know, a lot of guerrilla stuff, and afterwards, Phil Hammond, who is no stranger to standing up and doing the right thing himself, was going ‘What was it, what did your…what did our parents do that means that it’s…that it’s alright to stand up in a room of people shouting and screaming at you like that?’ And I don’t know the answer, I suppose it’s just being really nice, but I think…I think more people should feel OK about standing up and talking about problems in science because I can honestly say that my experience, but also the experience of people like Iain Chalmers, who’s the founder of the Cochrane Collaboration, which is one of the most important things in medicine. Global, non-profit, 24,000 academics now making systematic reviews of all the evidence on a particular question in medicine, summarising it, distilling it down into summaries doctors can use to make decisions, you know, when he started doing that, it was a blood bath, people were furious, and he is a very straight down the line, ‘No, this is the right thing to do, we have to do this’ and he got the job done.
Martin McKee, professor of public health and health policy at London School of Hygiene and Tropical Medicine where I also work – come and do the distance learning course, it’s very good! – he has similarly, you know, stood up and spoken out on all kinds of things that make people very, very unhappy and worried in health policy: smoking, big food and all that stuff. The consequences of standing up and saying ‘I think this is a problem’ are really not as great as people think. Somebody being a bit mean to you in a room is OK, like, if there’s a problem, that’s not a good reason to not talk about it.
I’m constantly amazed…the theme for this year for me has been federation and lobbying, behind the scenes chat to people in policy roles, in medical and academic bodies and also behind the scenes meetings with people from pharma, trying to get them to sign up to the AllTrials campaign and stop hiding the results of clinical trials and, um, over and over again you kind of, you start to see how there are these really important things that have been left unfixed just ‘cause people thought it was impolite to raise them. Senior people in policy roles, since AllTrials has got trundling – and now it’s got 50,000 signatures and 250 organisations supporting it, over 100 patient groups, all of the royal colleges, academies, societies, faculties, all of that bunch – senior policy people in those organisations have said ‘We knew that there was publication bias, we knew that people withholding the results of clinical trials was bad but we were always too embarrassed to raise it because it felt somehow transgressive’. You just think, like, bad, social anxiety perpetuated one of the most important flaws in the information architecture of evidence based medicine. This ludicrous situation where we spend millions and millions of pounds on each individual trial to try and ensure that it’s free from bias, but then at the end we allow half of all trials to go unpublished which allows all those biases to flood back in, hopelessly distorting the apparent benefits and risks of the treatments that we give.
Like, a situation so preposterous that future generations will undoubtedly look back on this in the same way that we look back on medieval doctors’ bloodletting; we just say ‘How unbelievably obvious was it that this was a stupid idea?’ And it didn’t get fixed because, as far as I can tell, people were a bit worried about somebody in a meeting thinking they were a bit subversive: people were a bit worried about some people in the Royal Institution public debate judging them. People were a little bit overly concerned with Steve Connor in The Independent writing a slightly mean, hissy piece about how unfair it is that they talk about a problem in science journalism.
These really important, serious problems go unfixed because people are too preoccupied with the social consequences of saying that the Emperor wears no clothes. And people shouldn’t be worried about that, that is at the core of science: the absolute kernel of science is saying ‘Show me the evidence, let’s talk about the problems in your beliefs’. And that should never be a socially transgressive thing.
On the MMR hoax
The MMR hoax, as I believe it will come to be known, is one of the best illustrations of problems in science because it encapsulates so much. Firstly, because there was one rogue scientist – which is a kind of recurring theme in these problems – Andrew Wakefield, who went way beyond the evidence and said ‘I think that children should have single jabs’. And that became this enormous media panic. But, interestingly, it wasn’t a media panic that kicked off straight away in 1998. If you look at the number of news stories mentioning MMR year by year, it actually peaks in 2001-2002 and it peaks over a baby boy called Leo Blair, Tony Blair’s son who at the time was about a year and a half old, and the Blairs refused to say if they’d given the kid the vaccine or not, and, rightly or wrongly, you know…maybe he had some medical problem which meant he couldn’t have the vaccine so, fair enough, they didn’t want to say whether he did or he didn’t, but that became the focus of the story and in fact Leo Blair – interestingly, and there’s research from Cardiff University School of Journalism– Leo Blair’s mentioned more frequently in news stories on MMR than Andrew Wakefield himself during 2002, the peak of the coverage on that news story.
So that shows you first of all that vaccine scares are often built on a political narrative rather than necessarily a piece of science, and that is important and interesting I think because it speaks to a wider theme in vaccine scares which have been with us since vaccination itself; they’ve been around for three centuries and anti-vaccination campaigners have been using the same argument for the past three centuries. So you can find in a Scientific American article from the 1880s a bunch of campaigners against smallpox vaccinations in Zurich saying ‘Hey, why do we need smallpox vaccine anymore? There’ve only been about three cases in the past couple of years’ [because you’ve had vaccinations].
It also, I think, speaks to a kind of really interesting wider theme around vaccine scares, which is that they are cultural and social phenomena. So, for example, in the UK we talk about the MMR autism scare which started in 1998, peaked in 2002; actually, very few other countries in the world really heard very much about that, a little bit in Japan but very little elsewhere in mainstream media. In America they had their big vaccines cause autism scare about five years after ours, and that was built on a preservative called Thiomersal, and that scare was pretty much unheard of in the UK and Europe in terms of mainstream media.
In France in the 1990s they had a huge scare about a Hepatitis B vaccine causing multiple sclerosis and it wouldn’t surprise me if I was the first person to tell you that because almost nobody’s heard of that outside of France and a little bit of French speaking Canada, even though you get compulsory Hepatitis B vaccine in 70 or 80% of the developed world.
In Kano province in Nigeria in 2002, WHO were on target to eradicate polio from the face of the globe when they were stopped by a vaccine scare that emerged which was driven by imams in this tiny little region called Kano up north, saying that vaccines, the polio vaccine in particular, was a plot by the American government working in cahoots with the pharmaceutical industry to make the people of Islam sterile. And that was a successful scare, if you like, in that Kano and northern Nigeria became a reservoir for polio and the virus itself was exported so you could find people if you typed their virus, you’d find people dying of it in Indonesia, Sumatra, on the other side of the world. But the scare itself also propagated, but again along cultural lines. So these vaccine scares are cultural products, they respect cultural, political, social boundaries, and it’s continued up right to the present day. So this year, I suspect it’s probably true to say that more people have been killed trying to deliver the polio vaccine than have died of polio itself. So we’ve seen a handful of deaths in Kano still, and a handful of deaths in Pakistan. And that’s because the Kano scare has propagated along lines of extremist Islam sentiment to Afghanistan, Pakistan, and it’s because people have been anxious about their vaccination programme in Pakistan because the CIA use the vaccination programme as part of their undercover project to try and catch Osama bin Laden.
So that’s a really long windy series of stories all, I think, showing that firstly, before we get anywhere near the science, vaccine scares often aren’t about the science; they’re often about trust, they’re about political opportunism and they’re about the kind of cultural, political and social backdrop. In fact, a kind of interesting tidbit: Kano in northern Nigeria is where the polio vaccine scare kicked off in 2002; what was happening in Kano then? Why Kano rather than anywhere else in the world? Well, there’s a famous drug trial called the Trovan trial which was run by Pfizer, which is very frequently associated with The Constant Gardener by John Le Carré, although he denies that it was specifically inspired by that but it’s very common to see them mentioned in the same sentence. This was a drug trial which has been widely described as unethical which resulted in a series of court cases in America, they paid tens of millions of dollars and settled out of court so there’s nothing you can say about whether they accepted responsibility or didn’t, but I think they paid about $75 million in the end, and this was in Kano province in northern Nigeria. And the specific time when the vaccine scare about polio kicked off was 2002, which was when the drug company Pfizer were first trying to dodge responsibility in the US courts and there was also lots of anxiety about the government colluding with them. There’s also now stuff in the WikiLeaks cables about Pfizer using dirty tricks to try and smear the doctors who were working in Nigeria to try and hold the company to account.
So, actually, in the context of all of that happening and a trial in which 11 children died, you can kind of understand why a vaccine scare about polio vaccine causing infertility – there was some kind of elaborate conspiracy – might actually to an extent have been a little bit believable. So these things happen in a real context.
But that’s not the only part of the vaccine story of public science…I hope you’ve got a lot of tape ‘cause this could go on for days.
So, the next thing I think that’s really interesting is bad behaviour by the media. So there’s clear evidence, before we get anywhere near the specifics of MMR and autism in the UK, that people believe, or at least act on, what they see in mainstream media that relates to their own personal health decisions. So you can see that on a very basic level, things that raise awareness change behaviour. So for example when Kylie [Minogue] had breast cancer, spontaneous self-referral for breast cancer screening in Australia shot up, and it doubled amongst women who were in the age bracket who could’ve gone for breast cancer screening but had never gone before. Same effect when Jade Goody got cervical cancer in the UK.
We also know that positive coverage is associated with greater uptake of treatment, negative coverage associated with less uptake of treatment. We also know that what specific newspapers do probably has an effect; so right now, there’s a measles outbreak in Swansea, where they’ve just hit a thousand cases, there’s one suspected death so far, and the editor of the South Wales Evening Post, which covers Swansea, has been very bullish in defending his newspaper’s content.
Now the South Wales Evening Post ran a famously vicious campaign against MMR very early on and this has actually been a study of…the subject of a published piece of academic work where some health researchers looked at vaccine uptake rates across the whole of Wales and found that they dropped by about 2% during the scare for MMR, but in the specific distribution area of the South Wales Evening Post, which includes Swansea, the specific distribution area of this one newspaper that covered MMR so viciously, the MMR uptake dropped by 13.5%. So that shows you the power of just one newspaper going on a crusade.
And you can see that in lots of other places, you can also see opportunism; so a fantastic example of that is the Daily Mail, the people’s medical journal, published in lots and lots of different places with some tweaks for local content, so there’s a UK edition and also an Irish edition of the Daily Mail. Now, two years ago when we were rolling out the HPV vaccine – prevents cervical cancer – in the UK the government paid for it and the Daily Mail, as you might expect, were campaigning vigorously against the vaccine. So they had stories about how a teenage girl had fainted after having the vaccine, as if no teenage girl had ever fainted before the invention of the HPV vaccine, stories about how it could kill you, really terrible stuff. At exactly the same time in Ireland, because the economy’s tanked, Fianna Fáil said they couldn’t afford the vaccine so they didn’t roll it out. And at exactly the same time as the Daily Mail were campaigning against HPV vaccination in the UK, in Ireland they were campaigning in favour of it: it was life saving. They even had this cut out and keep poster that you could put in your window which said ‘the Daily Mail’s Roll out the Vaccine Now Campaign’ like some bizarre relic from a parallel universe where nothing you know is true and everything’s been turned upside down; I mean truly, truly extraordinary.
So, if you can see exactly the same newspaper at the same time saying that a vaccine is killing you in one territory where the government is rolling it out and saying that it’s life saving and people are killing you by not rolling it out, ah, I think those kinds of discrepancies kind of show very clearly that there is cheekiness and obfuscation on evidence and that these stories aren’t driven by the science, they’re driven by something different.
But it’s not just about the media. So, it’s true to say that Andrew Wakefield’s original paper, which was a twelve subject case series report, was never sufficiently strong evidence to justify a big media hoo-ha. It was a series of clinical anecdotes about twelve children and if you find twelve children who’ve got autism but have also had the MMR vaccine and have also had some bowel problems, that doesn’t really tell you anything. You know I could find twelve people, um, who’ve all watched Postman Pat and then gone on to develop autism and have bowel problems.
A case series report like that is a very useful early indicator but actually not really for very common problems like that; so the prevalence of austism is maybe 1 in 100, maybe 1 in 50, maybe 1 in 200, depending on where you draw the diagnostic boundaries. A case series report would actually be very compelling evidence if it was a very rare cause, putative cause, and a very rare disease. So, for example, if you said to me, um, ‘I’ve got three people who’ve gone into space and then a third eye has physically opened in the centre of their forehead’, then I think I would probably say ‘Well, that’s pretty compelling evidence that going into space probably makes a third eye physically open in the centre of your forehead’, because very few people go into space so the exposure, the potential cause, is very rare and, you know, I’ve worked in outpatient clinics in some pretty hokey parts of London but I’ve never seen that happen before, I’ve never seen a third eye physically open in the centre of someone’s forehead so I’m willing to believe on the basis of this that probably, ah, going into space causes a third eye to open in the centre of your forehead and I want to look at that in more detail.
But finding a few kids who’ve had MMR when 93% of the population have MMR and a few kids who’ve got autism when 1 in 100 kids have got autism, that’s really very uninformative. But in any case, you know, people publish all kinds of crap in academic journals, that’s life, that’s the game, that’s part of the party that we’re all at, um, so, that’s to be expected and you’d expect journalists and doctors and academics to be critical consumers of this, and doctors and academics of course were and journalists less so. It’s since turned out however that that paper was hopelessly flawed and it’s now been retracted and Dr Andrew Wakefield, or to give his full medical title, Andrew Wakefield, has now been struck off the medical register by the General Medical Council.
What’s interesting about that I think is that it illustrates, again, flaws in the information architecture of evidence based medicine, because it took ten years for that to happen, Andrew Wakefield’s crimes – because I mean he did, you know, unethical experiments on children without proper ethical coverage and all of that stuff – weren’t revealed by anyone in science, they were revealed by Brian Deer, an investigative journalist for the Sunday Times. The retraction took a decade and both the journal and the various institutions that Andrew Wakefield was associated with were very reluctant to investigate his scientific misconduct. And nothing there has changed since MMR kicked off in 1998.
So we still are completely hopeless at investigating scientific misconduct, it’s very, very difficult to find who’s gonna take responsibility for that even today. And so, I think, packaging all of that up…people talk about the great MMR autism hoax as if it was a thing of the past, but actually, doing a catch up for the measles vaccine for a few kids in Swansea or anywhere else in the country is trivial and prevention is better than cure. And actually we’ve addressed none, not a single one, of the core causal factors for the MMR autism scare. We haven’t addressed media scare mongering, we haven’t addressed how we deal with scientific misconduct in medicine and science and so, because we know that vaccine scares recur on a regular cycle and have done for the past three centuries, we know we’re going to have another one, we’re definitely, definitely going to have another vaccine scare, and unless we address those core causative elements then we haven’t fixed the problem. Fixing public confidence on MMR doesn’t do anything to stop the next vaccine scare and who knows what it’ll be on but I would guess, since the cycle’s about 15 or 20 years, that we’ll it see in, I don’t know, maybe, I’d say 2020, people have to forget the last one.