Hard News by Russell Brown

57

An interview with Ben Goldacre

The first time I contacted Dr Ben Goldacre was in 2009, as his public profile was beginning to really take off, thanks to his Bad Science column in The Guardian, the book of the same name and his witty, acute appearances debunking medical cranks on the likes of the BBC's Newsnight.  We were trying to get him here for a Public Address Great Blend event and we talked, but by the end of the year, as his out-of-office message had it:

" ... experiencing spectacular email backlog, on the edge of declaring email bankruptcy ...  if it's about giving a talk, the answer's probably no these days as i've got a day job, and 8,734 other mischievous projects on the go, so unless it's free admission and open to all comers, and even then, sorry, probably no."

Such was the lot of a particularly successful science communicator. He went on to write a second, more disruptive book, Bad Pharma, which exposed the way that drug companies manipulate approval processes by selectively reporting trial data. In the wake of the book he founded AllTrials, an initiative which calls for "all past and present clinical trials to be registered and their full methods and summary results reported" and he continues to draw attention to the "replication crisis" in research.

His day job is as a Senior Clinical Research Fellow at the Centre for Evidence-Based Medicine at the University of Oxford. But he still gets out to communicate – and he will be appearing in Auckland on September 24 at the Mercury Theatre in An Evening with Ben Goldacre. I spoke to him on the phone yesterday.

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Is all this "being a public figure" easier to manage now?

Yes and no. I'm not famous – I have what I would describe as "highly contextual micro-fame". And I really recommend it. Someone comes up to me in the street to say hello about once a day. And they're usually the kind of nerdy of nerdy, gaze-avoidant person that I naturally gel with and their interests are similar to mine.

It's embarrassing being short of time. I've always hated being short of time. I don't think I have particularly good social skills, so if I have to run off on the middle of a conversation or if I can only talk to someone for five minutes, I feel like it's very likely that people will come away from that interaction with the impression that my disappearing is motivated more by grandiosity than the fact that I'm literally about to wet myself unless I get a catheter in, because I haven't been able to go to the toilet for six hours.

I presume it is important to you to continue being a medical researcher through all this?

It never stops the day job. I've been either a full-time doctor or researcher for almost all of the last 15 years. And I still am. I've got a job in Oxford where I do work on better use of data in healthcare and we've got a whole lot of papers coming out over the next few months, which are all going to be very exciting. Writing has always been on the side.

It's interesting, actually – even the organisations that say they're very supportive of scientists doing public engagement and working on policy stuff, when it actually comes down to how their administrative systems work at the coalface, they're very unhelpful.

For example, I had academic funding for a long time from Wellcome, the Wellcome Trust. And they make a huge song and dance about how important they think public engagement is, how important it is for scientists to talk to policy-makers.

But when, for my very lowly junior researcher grant, I needed an extension that didn't cost them any more money – I just wanted to go part-time for a little while and have less salary, but over longer period of time, so I could do some public engagement and some work for the Education minister in the UK, it was actually made very difficult. Their grants scheme system couldn't cope with somebody going part-time for a reason like that.

It should be easy for people to do what I do, and I would like more people to do what I do. I would like to see more doctors and researchers talking to the public about what we do as doctors and researchers. People expect that to happen by magic or by osmosis, or as a hobby. And that's not really possible.

I think if you want people to do this kind of thing, then you have to have some kind of practical support for them. That doesn't necessarily mean you have to pay them, although that would be good, because not everyone can make a living from talking to the public. But it does mean that you have to have an employment programme that is flexible for people doing public engagement, in the same way that it just about manages to be flexible for people having children.

I'm struck by how some of the things that you've written and talked about never seem to go away. We've seen Andrew Wakefield of all people come back for another round this year. How does this still happen?

Well, I guess one thing to say about Andrew Wakefield is that he has very much faded from view. He crops up on conspiracy theory cruises and slightly depressing places like that, but I'm not sure that he continues to wield the same level of influence and impact that he did at the peak of the clash.

The reality is that vaccine scares have been around since the beginning of vaccination, they've been with us for over two centuries now, and they will always be with us. The characters, cast and crew will change, but there will always be people like Andrew Wakefield. And so that's why I think we have to stop talking about individuals like Andrew Wakefield and start talking about the structural vulnerabilities in society that mean that vaccine scares persist.

We have to start talking about our failure to educate children and the public in how evidence-based medicine works. We have to start fixing the problems with medical regulators and the failure of policy-makers to address drug companies withholding the results of clinical trials and playing fast and loose with patient data. Because all of that is fertile ground for quacks. All of those true but very technical shortcomings in healthcare create fertile ground for conspiracy theories.

So Andrew Wakefield will never go away – Andrew Wakefield will be with us in a hundred years' time, just with a different face and a different name. And the only way to stop people like that from having power and influence is by addressing the structural shortcomings that allow their ideas to take root.

The manipulation of trial data is, of course,  what you describe in Bad Pharma. I wonder if a particular problem there is that it involves a system we've been taught to trust.

One of the biggest problems is that the whole world of medicine has been driven in the public eye by trust rather than evidence. And that's not to say that the people we trust have necessarily always been untrustworthy, but the problem with trust is that it's always been based on things like how does somebody seem to you as a person? Or what is their role in society?

And actually, those aren't very good grounds for making informed decisions about healthcare. Really our decisions in healthcare should be about the methods and results of clinical trials. It should be about everybody being able to have a good, thorough critical conversation about the shortcomings or the strengths of a particular study.

When it always comes down to trust, when you have medical regulators looking at secret documents behind closed doors and then just saying "trust us when we say a drug is good or a drug is bad", firstly that's no way to do science.

But also secondly, that's no way to get public opinion on your side. In the 21st century, the fact is that society doesn't run on trust and authority any more, it runs on evidence and open public discussion. The world of medicine and medical regulators has been really slow to catch on to that reality, but it's a one-way ticket – there's absolutely no way back. The era of secret medicine driven by authority figures is firmly in the past. It's sad that there are so many senior doctors who struggle with that notion, but they need to hurry up and retire so that people with better ideas can take over.

You seem confident that the broken system can be fixed.

Yes. To be clear, when we say it's broken, we're talking about shortcomings. Your chances of dying as a middle-aged man have halved over the last three or four decades and that's not because of any sudden, amazing, epoch-making individual breakthrough. It's because of a heap of tiny, modest shifts in our understanding of the benefits and risks of a huge number of different treatments, health-risk behaviours, screening programmes, diagnostic tests and so on. Medicine moves ahead very incrementally, but it is moving ahead.

My concern is the missed opportunities. It's not good enough to give someone a treatment that's better than they had in the 18th century – what we need to be doing is giving people the best treatment for them, right now, today. And that's what we fail to do when we accept second-rate evidence. Because when you have second-rate evidence, people make second-rate decisions. They use second-rate drugs when they should be using the best.

But these days, for most classes of drugs for most diseases, we actually have very limited evidence on what is the best treatment. Which is madness! We should be conducting randomised trials as a matter of routine every time there's any uncertainty about which treatment is best.

And we should be investing much more than we do at the moment in communicating the results of scientific research much better to doctors and patients, so they can make truly informed decisions about which treatment works best.

At the moment, the whole project of disseminating clinical evidence to doctors is in the hands of a kind of oral tradition. So we spend tens of millions of dollars on every individual trial – but we spend almost nothing on communicating the results of those trials to doctors and patients.

Actually, if you think about it – as a doctor, if you qualified in 1976, then almost every single treatment you prescribe came on the market after you left formal education at medical school. And yet you're expected to know about the strengths and weaknesses of the evidence, you're supposed to know which is the best treatment. As a doctor who trained in the 70s, almost all of the modern treatments that you prescribe were basically self-taught. Now, that's no way to run a health service.

We need to spend money on summarising information, on finding out what's the best way of summarising that information for doctors and patients, and auditing to see which of those methods is most effective at getting people to consistently use the best treatment. That's what we should be spending our money on.

You know, frankly, if you put me in charge of the Medical Research Council or the New Zealand medical funding agency – and to be clear, this is extremely unlikely – I would cancel all primary research for the next year. Every new trial. And I'd spend every penny we had on researching what is the best method of synthesising and summarising the evidence we already have. What is the best method of communicating that to people, avoiding information overload, the best targeted method for communicating that information to decision-makers – and then putting it into practice.

That's the single most cost-effective spend you could make in medicine today. It's not an innovation programme for the next hundred years. But right now, because we are so grotesquely under-using the information we already have, it's the single most cost-effective thing you could do, this year.

So what's the obstacle to that? Where's the roadblock?

I think it's the culture of academic medicine, quite frankly. We've been sleepwalking and we find ourselves in an era where there are huge stand-alone individual research projects like clinical trials, which involve a huge number of staff because they involve so much difficult admin.

I mean really, with a clinical trial there are seven interesting days at the beginning and then seven interesting days at the end, but everything in the middle is hellish admin. It's getting forms sent out to the right places, inspections at trial sites, making sure one piece of paper matches up to another piece, trying to get people recruited into your trial. But all the interesting science is done in the first seven days and the last seven days.

So there's a huge workforce required to run a clinical trial, because of the inefficient way we do clinical trials at the moment, and as a consequence, the people who run clinical trials have an almost political power in the universities and hospitals where they work. What's happened is all of this power has accumulated to the individual stand-alone research projects like trials. They operate as kind of city-states within a university, but almost nothing is being spent on all of the supporting tissue in between the trials.

Almost nothing is being spent on better ways of synthesising all of that evidence together and getting it into the hands of doctors and patients, the people who really need the information, the people who matter. All of that work has been kind of derogated, I think often very sneerily, by the people who work on standalone projects like clinical trials.

Its regarded as second-rate, less-glamorous, less scientific. That's an accident of history – I honestly don't think the work that these stand-alone trials do is any more intellectually demanding, or important, than that done by people who are out there stewarding the knowledge, making sure the right information gets to the right people at the right time. That stuff's been left behind, and it's been left behind for cultural and political reasons.

I think we need to cut off the legs of the people who currently have the funding and the power around these big stand-alone projects and start spending much more on the people who are out there getting information into practice. That's a difficult and boring job, but so is running a clinical trial.

If you want disseminate information to people to help them make informed choices, you need to have a lot of medical librarians, perhaps even people out on the road, communicating directly. You need to have software engineers to make shared decision-making tools that are embedded into your family doctor's computer and don't pop up too many alerts – otherwise they'll switch them off – but do pop up the alerts that really matter.

And when you've built something like that, you need to start doing a randomised trial, to see whether it really does improve decision-making and health outcomes. All of that stuff is the real meat and the real opportunity in healthcare today. Not more and more incredibly inefficient, over-expensive clinical trials.

What's your take on medical cannabis?

Ha! Well, firstly, I don't think any drugs should be illegal. I think all drugs should be legally available one way or another. And I don't say that because I think drugs are fantastic and harmless, I say that because I think the harms of prohibition are clearly far greater than the harms of the drugs themselves.

You see that very clearly when you look at heroin, probably more than any other set of drugs. The harms inflicted inflicted on our society by cannabis being illegal are clearly greater than the harms of cannabis – although cannabis clearly does have some harms.

I think a lot of the time when people talk about medical cannabis, it's really a bit of a smokescreen for the fact that they would really rather be talking about recreational cannabis, but that's a harder conversation for society to have.

But at the same time, I don't have a problem with it being used as a rhetorical device to lead us closer to the end of prohibition. Prohibition of drugs has been an absolute disaster and there has to be a better way forward.

In the long run, you have to have a society where drugs are treated as grudgingly accepted vices. You need to be able to say to people, "look, it's a really bad idea to use heroin on a regular basis, it's probably going to stop you doing a lot of other things that if you were honest with yourself you'd probably really rather achieve," but fundamentally, if people want to take those drugs they're going to. And if you put them into the hands of criminals you're going to do a lot more harm.

So for all that people involved in the world of medicinal cannabis might sometimes overstate the evidence, at the same time the cause that they're ultimately working towards is incredibly important. There are very few things in the world of social policy that cause quite as much avoidable suffering and harm as prohibition.

The things you're talking about there are largely to do with social science. With our medical regulator here, we have seen situations where the expert advisors have basically said, "well if people are using this and they don't know what the ratios are in their black- market marijuana or how to use it, that's outside the frame, it's social science and nothing to do with us". Is there a point medical regulators and researchers have to say, "well, maybe social science is important to what we do as well"?

Of course there is. What you really want is all of your best heads on every job. Unfortunately, the reality of political decision-making is that it's a mash-up of evidence and thoughtfulness, which are available in plentiful supply among a lot of politicians and civil servants, but are unfortunately mashed up with prejudice and populism.

So yeah, you need the right tool for the job. If you want to know whether something's going to do good or harm as a policy intervention, you need to talk to medical researchers if it's a medical problem, social scientists if they have something to contribute – and both on something like drug policy.

But the reality of something like drug policy is that it's predominantly, as a public conversation, not about the facts. It's about people taking their personal prejudices and wrapping them up in some very unrealistic fantasies. Nobody really wants to see people destroying their lives with crack and heroin, but in the world of prohibition, we imagine that if we make heroin and crack illegal, people will stop taking them. And I just don't see any evidence of that.

Have the media got any better or worse at science in the time you've been writing about these issues?

Ha! Well, I'm not aware of any longitudinal studies that would make a fair comparison over time to say if they've got better. But I think the incredibly refreshing thing is that they've become less relevant. Wen I started writing about this stuff 15 years ago, mainstream media were the only game in town. It's incredible to think that 15 years ago, you couldn't talk back. The internet was not like it is today.

Now, if you see somebody writing something stupid or dumbed-down in the newspaper, you don’t just complain about it to your friends. You can write a blog, and you can go out there and read somebody else's blog. And you can go out there and access papers and review articles and Wikipedia pages and blogs and Twitter streams from people who really know what they're talking about – and you can train yourself on the basics of evidence-based medicine or any other science that you're interested in, applied to any contemporary issue, as long as you're sufficiently clueful and motivated to go out there and do it yourself.

I think we live in the greatest possible era of all human existence. We're blessed. So the great news is, it actually doesn't matter if mainstream media are getting stuff wrong more or less, because we don't have to care any more. It doesn't hurt us as much as it used to because we've got better options.

And yet, that same internet is of course the primary vector for all kinds of pseudoscience.

That's right. But I think it's actually much easier to detect bullshit online than it is in a newspaper. If you look at a newspaper reporter writing up the views of an obvious quack or crank, they'll use every trick in the book to present that person as a conventional mainstream authority. Because they're news journalists, they understand the kind of voice that you use to present somebody as credible.

When a swivel-eyed conspiracy theorist writes 4000 words of invective against a vaccine, when a vitamin pill-peddling evangelist produces a giant website covered in adverts about how fantastic their pills are, you know what? I don't think that's very difficult to spot. And when people go out there and they read that stuff online, if they believe it I think they're making much for of an informed choice. As Withnail says in Withnail and I, these aren't accidents, they're throwing themselves willingly into the road.

I must say, things have improved here. Our major newspaper, once a consistent statistical offender, now has a data journalism centre. And things have improved markedly. Do you see that happening elsewhere?

That's interesting. What I feel like I see is, you can add some good stuff into the mix – set up a data journalism team or a fact-checking operation – but it doesn't stop the bad stuff. It just adds some good stuff into the mix. And I think that's fine as far as it goes. I'm always pleased to see people making money from writing, and that includes newspapers. I think it's really important.

Data journalism centres are a really interesting example of newspapers doing what newspapers can do best. It's always very disheartening to see newspapers endlessly duplicating each others' work, but none of them going out to produce unique coverage. The thing that gets me to visit a website or buy a publication if they're doing something that nobody else is doing.

It's always surprised that that notion hasn't filtered through to editors. Editors still seem to be preoccupied with the idea that they need to do a little bit of everything superficial and that's the secret of success. I actually think that's untrue. If a newspaper or a news resource or website wants to do well in the modern world, I think what they need to do is only the interesting and unique stuff that you can only get from them.

What worries you the most at the moment?

Ha! I guess complacency, that's fundamentally what it comes down to. All of the big grown-up campaigning stuff that I've been doing, trying to draw attention to and fix structural problems in medicine … when you see people in very senior roles who should know better, people that I have very high respect for, when you see them responding to criticism in exactly the same way that a homeopath or a vitamin pill peddler would, by using distraction or resorting to ad hominem attacks, I feel very disappointed. It feels to me like the last days of Rome.

These are people in very elevated social positions who seem to have forgotten that their principal role is serving the public and delivering truth and accuracy and good evidence.

I think what happens in medicine – and this covers academic journal editors and regulators in particular – is that when you're in the business of doing good, because most of what you do is good, it's tempting to let yourself off the hook for your shortcomings. If someone comes along and say "we're all in the business of doing good, but on this occasion you've done the wrong thing," it's very tempting to try and brush that off and say "this person's an idiot, I spend all my time doing good things".

Actually, people like doctors, senior researchers, academic journal editors and senior medical regulators are if anything more vulnerable to being blind to their own shortcomings. Just because they're so confused with this notion that 99% of what they do is good and therefore it's okay to dismiss criticisms of the 1%. And I think it's not okay to dismiss those criticisms.

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