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'The Ugly Truth'

by Tracey Brown, director of Sense About Science

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June 2012

Can Journalists and Health Information Professionals ever be friends?

By Andre Tomlin

 “Journalists are all heavy drinking hacks with no idea about healthcare or scientific research. They just want to sell newspapers and further their own careers.”

       Quote from an imaginary Health Information Professional

“Health Information Professionals are all boring, mousey nobodies who wouldn’t know a good headline if it smacked their bifocals off their face. They just want to push their side of the story and get more money for their organisation.”

       Quote from an imaginary Journalist

These are clearly extreme versions of the truth, but it’s undeniable that these two professional groups haven’t always got on. Journalists and Health Information Professionals often seem to be at odds over key health issues, but surely if we can build good working relationships we can help each other and dramatically improve the quality of information that gets out to the general public?

I was very fortunate to attend a meeting organised by the British Library, the Association of Medical Research Charities and Sense About Science, at the British Library on the 28th May, which brought together a group of about 30 Health Information Professionals with three leading health/science journalists. The aim of the day was to discuss how best to connect medical research to public debates as they unfold.

So how can we break down some of the established barriers between these professional groups and work more effectively together? We may not have exactly the same goals, but we can certainly help each other a great deal. After all, Journalists need good stories and Health Information Professionals need exposure. It seems like a perfect match.

Here’s the advice that the Journalists gave to the Health Information Professionals:

  1. Write better press releases
    1. Write in human language that the man/woman on the street can understand
    2. Make the story interesting and thought-provoking, but don’t over-sell it
  2. Be available for interview
    1. Make sure your lead researchers and experts are at the end of the phone when the press release is published
  3. Contact news teams at the right time
    1. For newspapers that’s 0930-1030, 1500-1600
    2. Give a few days notice for TV and radio

Here’s the advice that the Health Information Professionals gave to the Journalists:

  1. Write better headlines
    1. Eye popping headlines sell newspapers, but they can misinform and confuse
  2. Train your staff so they have the skills to read and understand research
    1. Journalists have far better critical appraisal skills now than they did 10 years ago, but more needs to be done to ensure that poor quality research does not reach the masses

Here’s the advice that the Health Information Professionals gave to each other:

  1. Write better health information
    1. A great deal of online health information is still inaccessible, unusable and unreliable
    2. Health information teams need to have the skills to be able to find and appraise good quality research, summarise it for their audience, write lay friendly and engaging information and publish it in a format that works for their audience
  2. Strike the right balance between information-giving and fundraising
    1. Too many health information websites make fundraising and donations the priority, often because the PR/fundraising team manage the website
    2. Your audience should be able to easily answer their health questions first and foremost. Don’t make this harder by putting fundraising messages in the way
    3. Henry Scowcroft from Cancer Research UK stressed the importance of this issue and highlighted that it remains a constant challenge for his team
  3. Use social media to reach your audience
    1. Twitter and Facebook are incredible tools for reaching your audience, whether you want to publicise a campaign, gather user views or simply discuss specific issues
    2. We heard a great case study from Sarah Mehta from the MS Society who have used Facebook and conventional open meetings really effectively to personally engage with their community and manage difficult and often very emotive subjects

The workshop was expertly chaired by Tracey Brown and run like clockwork by the dynamic Sense About Science team. I certainly left the British Library feeling very positive and with a bulging book of new contacts.


Andre Tomlin is an Information Scientist and has worked in mental health for 15 years, formerly at the University of Oxford Centre for Evidence-Based Mental Health and since 2002 as Managing Director of Minervation Ltd an evidence-based healthcare consultancy based in Oxford. He is also the Mental Elf: http://www.thementalelf.net/, keeping people up-to-date on guidelines, research and quality patient information in the area of mental health.

[email protected]


Where Sense About Science comes from

We kind of knew what was coming. Rothamsted researchers wanted support, perhaps a petition, and help picking up any questions among the public that they’d missed in their (pretty extensive) previous engagement work. Their research was threatened with destruction and it was a situation that so obviously fitted Sense About Science’s ethos of promoting discussion of evidence ‘free from stigma and intimidation’ (something which sounded so high minded when we first wrote it ten years ago and in practice has meant dealing with everything from vandalism to media frenzies to libel threats to bombs under cars).

There shouldn’t have been any doubt that we’d respond. What’s more, even leaving aside the issue of intimidation, this research was on a subject that people definitely do still have questions about – genetic modification. It crops up all the time in our call logs. Our Making Sense of GM publication (‘What it is and why are scientists doing it’) has had to be reprinted four times. And helping the public to pursue answers about evidence is very definitely our remit. But the GM thing…  Helping should have been an obvious ‘yes’ but my thoughts went straight to the bucket-loads of invective and conspiracies that would come with doing anything on GM. All that had subsided nearly a decade ago along with the junk mail to our homes (Dear Mr G M Conspirator, our windows specialists have completed a review of your area… actually that was quite funny compared to the more intimidating stuff). This promised to invite it all back.

But. We tell others to brave the brickbats. We preach answering people’s real questions rather than the ones you’d like them to ask. We tell people off for moaning to their mates in common rooms and labs about the way evidence is discussed (or missing) from policy or public discussions, instead of doing something about it. And we’ve signed up over 5,000 scientists and hundreds of organisations to that cause.

We were unable to explain to ourselves why we wouldn’t do something here.

And so now here come the bucket loads, particularly since the direct action was unsuccessful last Sunday and met with condemnation among the public and in the press. On the day itself, Take the Flour Back speakers were already explaining their inability to ‘decontaminate’ the research crop as the result of sinister outside forces aligned against them. Some said, as Jyoti Fernandes said to me on Newsnight the other week, that the threat of destruction had been a way of getting attention. But for most (who booed their own farmer speaker who said he was against GM but didn’t think they should destroy the experiment) the destruction should have gone ahead if it wasn’t for BBSRC and its business and media friends, the police working to the tune of Monsanto, ‘pro GM lobby group’ Sense About Science and so on. That was the main theme. At one point I was sitting talking to a local farmer who’d come along to see what all the fuss was about, having to say ‘that’s us they’re talking about' as the TTFB speakers said that Sense About Science had infiltrated the highest levels of Government, that their director (me) is part of the ‘notorious living Marxism network’ and we’re part of a neolibertarian movement pushing a corporate agenda. There were lots of jokes by scientists about how to wield my newfound powers. I ended up weirdly offended that the farmer didn’t find it very believable.

I’m not now so willing to laugh it off though. Some people do just make things up dishonestly as a tactic for winning an argument – there’s probably a bit of that going on. However I think in this case the feeling among a group of people campaigning very strongly against GM is that they are so very right and the scientists so very wrong that the only explanation for the GM wheat research going ahead and finding support is that there is a powerful conspiracy. If Sense About Science didn’t exist, they would probably conjure up the conspiracy a different way. No evidence from the thousands of people we work with across science and all sections of society, none of the actual things we do on many many subjects, or material we produce, will cut into that. I wouldn’t expect people under those circumstances to believe anything that contradicts them, not even if that’s our independently examined accounts filed with the charity commission. On that basis, and because we’ve always been overwhelmed with far more requests for help and cases of dodgy science to take up than our small staff can get through, I’ve largely been minded to leave conspiracy theorists to it.

But I detect some uneasiness among more reasonable people out there, about why there’s such invective against a small charity, whether there’s anything to the conspiracies and why they’ve persisted. And even more the case, there’s frustration among some of the scientists we know and admire who have found it hard to counter that kind of innuendo about us, especially when it’s not very specific (lobby group implies paid to get a policy result – but if no specific accusations of funding are made or no actual policy lobbying is identified, how do you contradict it?).

So for them, not for people who will always imagine a conspiracy, I think it’s a good idea to explain what the situation is in relation to those conspiracies. With a lot of toe curling I’ve had a look around the kinds of websites I usually try to ignore and some of the comments under press articles.

The most obvious thing is money. Corporate lobby group, industry funded etc. Sense About Science has never had funding from agribusinesses. Not Monsanto, Syngenta, Dow, DuPont (those are the only ones I can think of just now, but none of the others either). We have turned down all suggestions that we might get some. The main reason for this was the nature of the GM debate combined with the fact that there was a significant policy decision in front of Government about regulation of GM. We felt that, leaving aside the external perception, even if donations were offered without any expectation that Sense About Science would do something in return, there was a risk that this expectation would develop. For the sake of eliminating doubt, we don’t get some from people acting on their behalf either – we have no funding from PR companies or anything like that.

Sense About Science is also not reasonably described as ‘industry funded’. There were some years at the beginning of our existence when we had more donations from companies (though to reiterate, no agribusinesses). Applications for philanthropic grants took longer to establish (they have a long lead in time and require detailed planning) and we had almost no staff, whereas at that time, around 2002-5, companies were pretty relaxed about giving to charities and the view of the chairman or other senior person that a cause was worthy was often enough to elicit a donation. Nowadays corporate charitable giving has really dried up, and my perception is that it has also become more like ‘strategic giving’ for a lot of organisations, so we don’t pursue it much, though we would welcome more donations from companies if they abided by our donations policy.

Our projects aren’t directly funded by companies – they are only invited to donate generally to our core aims (these are as listed on the charity commission website and our own ‘to further public education about evidence… etc’), with the exception of our international peer review programme and associated activities which has donations by publishers including companies such as Wiley, Nature, learned society publishers and other charitable companies such as PLoS. Some of those have also donated to the libel reform campaign. We don’t completely rule out the possibility of a future project with company funding but this would have to be something we considered very carefully.

Donations in the year to 6 April 2012, which I’ve just had the figures for from the book keeper, show £3,500 of corporate donations outside the publishers on the peer review programme. This is less than 1% of our turnover. I hope it’s more this year! The majority of our funding comes from professional and learned societies, and other science education organisations, trusts and foundations, and members of the public and individual scientists. The latter is largely made up of people who donate on standing order between £5 and £50 a month and hundreds of people who have donated to our appeals on Just Giving pages.

A couple of websites I’ve seen list science bodies who have contributed to our work as themselves having corporate connections, e.g. BBSRC having company representatives on their board. I wasn’t aware of that until I read it. I can’t imagine the boards of such large organisations take direct decisions over a few hundred or thousand pounds towards a project. I’ve never experienced any pressure from other organisations in the service of corporations.    

‘Sense About Science is pro GM’, a ‘GM lobby group’, etc. Sense About Science has actually done embarrassingly little on GM. We organised a talk at Parliament by Gordon Conway, we organised a talk in partnership with the Natural History Museum on the importance of public good plant breeding. The speakers there were MS Swaminathan, Peter Raven of the Missouri Botanical Garden and Phil Dale of John Innes. This was about trying to reignite the case for public good plant breeding. Apparently public sector plant breeding work in the UK had a lot of funding withdrawn during the time of the Thatcher government, which many blame on companies pressing the Government not to give such advantages to competition from the public sector. We circulated a letter by scientists in response to the discussion about the Government funded GM field trials. This was not lobbying by those scientists. It was telling the Government off for failing to explain the purpose of the trials and what they had actually found, leading to lots of misleading headlines. The feeling that the Government hanging back and hoping the scientists would ‘win the GM argument’ turns out to have been true – Alastair Campbell wrote about exactly such a conversation with Tony Blair in his memoirs. The only ‘lobby’ type conversations Sense About Science had (i.e. pressing politicians) was on this point – that they were politicising the science by doing that and this was dangerous.

Making Sense of GM was a collaborative publication with learned societies and public sector bodies, like all our Making Sense of... series (these include: weather and climate, radiation, statistics, chemical stories, health testing, screening). Incidentally, the overblown article about undeclared interests on that relates to Vivian Moses an academic who ran CropGen. That’s a website about GM. He didn’t get paid for it but their site registration fee was paid by a biotech company (it was quite open about that). Vivian was one of 28 contributors to our publication, which is about why scientists, not biotech companies, are interested in the GM technique. We were tendentious in Making Sense of GM, but not in the way that anti-GM campaigners have suggested. It was very definitely a public sector-oriented publication, because we felt that this was a missing voice in the discussion that had become polarised between big business and anti-GM campaigners. We did try to get someone who had once been a toxicologist at Monsanto to be one of the 20 or so additional people to review it (it was also widely reviewed by members of the public before we published – something we do with all our publications) in case we had got the things we said about companies’ products wrong. But we were late getting the draft ready and he was away and unable to do it. 

Sense About Science doesn’t promote particular technologies. It promotes respect for evidence. Sometimes that evidence points towards a particular course of action, like vaccinating children or reducing carbon emissions, but it is still a social and political decision whether to take that action. 

The less common but fairly prominent claim is that Sense About Science is part of a Living Marxism network or part of a notorious network, which refers to the same thing. This is about me. My own involvement in the Revolutionary Communist Party until it ended about 15 years ago is a matter of public record.

I think most people would expect someone in my position and in the charity sector to have a political past. It’s not a subject of regret or embarrassment. I am proud of it, of taking a radical route rather than becoming head of a college events committee or whatever else was on offer (not that I would hold that against anyone either). I am glad I was involved in things that mattered, like patrolling Brick Lane to stop the national front turning over food stalls. I am also grateful for it. It taught me to know the world and to apply myself – I can’t think of much else that would have made this girl from a caravan park, daughter of a Shoreham Biker, read Capital and The Wealth of Nations! It also made me able to stand up for what I think is right even if it’s not popular.

I’m still in touch socially with some individuals I knew from then – some number among my good friends. Some people from that time set up new things when the RCP ended in the 1990s, Spiked online and the Institute of Ideas/Battle of Ideas event. Sense About Science was not one of them. I attended and gave talks at a few events and replied to a couple of spiked surveys some time ago but my interests have moved and I’m not engaged with anything more broadly any more. As Director of Sense About Science I’ve given around 200 talks and written a lot of articles for all kinds of audiences.

In the context of these network conspiracy theories, Sense About Science has been accused of being a neolibertarian group. I’m embarrassed to say that when I heard that from anti-GM activists last Sunday I had to consult the ‘geeks in the park’ around me to find out what it meant. I understand it means wanting no regulation of companies. I can’t square that with anything I or Sense About Science has done in the past ten years. It seems bizarre to me.

The origins of Sense About Science

I saw yesterday for the first time a claim that Sense About Science was formed ‘just in time for the UK’s GM public debate’, and I think that might make sense of why there was a pretty intense attack on our fledgling organisation back around 2003 time. In fact it makes sense of why some more mainstream anti-GM commentators thought that this was an initiative of agribusiness, including the piece in 2003 by George Monbiot which he says is based on material provided by Jonathan Matthews of GM Watch. This is a piece that has been syndicated and recycled many times since. In fact, every time Sense About Science puts forward scientists or publishes something on a controversial issue it gets rediscovered. The homeopaths who were angry at our Newsnight exposé of people being prescribed homeopathic anti-malarials to travel to central Africa have republished it, anti vaccination groups have picked it up and restated it, Zac Goldsmith recycled it in response to some of our scientists addressing misleading claims about chemicals in our science and celebrities review a few years ago. GM Watch seems to have repeated it in lots of places.

In fact Sense About Science was formed as follows. In 2001 Lord Taverne, who was our chairman until 2011, wrote several essays, the main ones in Prospect, about what he feared was increasing misrepresentation of science. This was at a time when the news and commentary contained a lot of anti-MMR stories, anti-stem cell research, anti-GM, claims by maverick Italian scientist that he had cloned a human embryo, fears that mobile phones caused cancer, medical research charities faced bomb threats, the Prince of Wales was running a big campaign for alternative medicine and there were all kinds of dubious lifestyle and medical ‘therapies’ that seemed to be on the rise. Dick, as his farewell lecture this year set out, thought much of this, particularly the ‘back to nature’ idea, a challenge to the thinking of the enlightenment.

Many people contacted him saying that something should be done (I only know this by their account, by the way, because I wasn’t yet involved). I believe they included Bridget Ogilvie, former chair of COPUS and director of Wellcome Trust, Shereen El Feki, journalist at the Economist, John Maddox, former editor of Nature, Mark Matfield of the Research Defence Society, Peter Marsh, of the Social Issues Research Centre, Chris Leaver, head of plant science at Oxford and Lord Plumb. Lord Taverne got some of them together to discuss what to do. The group decided that an organisation was needed to counter misinformation and in particular to try to get more scientists speaking publicly. Note that this was a time when university departments frowned on academics engaging with the media, there weren’t grants for public engagement and scientists who were vocal on controversial issues, like Colin Blakemore, were targeted with really nasty campaigns. A group of them went on to become our first trustees. Some people were approached later to join the trustees, including Sir Brian Heap of Cambridge and Mike Fitzpatrick the GP who wrote on MMR. (I think it’s pretty well known that Mike Fitzpatrick was also involved in the RCP. This had nothing to do with him being approached – he was one of the few people who spoke and wrote about the MMR vaccine and autism and our soon-to-be trustees asked me to contact him. He might have said yes because he knew me – I’ve never asked him that.)

How I came to be involved was very lucky for me. I had spent just over a year working for a crisis management and public relations company. They had, had the idea of setting up a research unit and I - facing uncertainty about my future because the EU Tempus project in Russia that I had been running at the University of Kent for three years was at an end - took the job. It turned out that research in that context doesn’t make money though. Towards the end of my time there I got chatting to the social psychologist Peter Marsh at a conference. I told him about my Wild West experiences trying to set up research and teaching centres in Russia. He told me about Lord Taverne’s group and that it might at some stage want a director. I gave him my number. Which was fortunate. Because shortly after that in late 2001, when I was 8 months pregnant, my employment was ended. I signed a compromise agreement so haven’t been able to write about that. Dick Taverne phoned me a week before I had my second son. We met the next day and he offered me the job, which I agreed to take up part time in 2002. There was no money at that point but I had some flexibility because of the terms of my settlement of my previous job.

So, despite not being able to write about it, I hope it’s clear that there was no ‘PR’ link between Sense About Science and my previous job. I didn’t really have much experience of PR myself anyway. Something has been made of the fact that Ellen Raphael worked with me all through my various posts until she left Sense About Science a couple of years ago. She’s fantastic and good at everything I’m bad at. She’d started by helping me out at the University of Kent Russian project and on various bits of jobbing research that I did. I had recruited her to the research unit job when she finished her Masters. I was desperate to recruit her back to work with me once we had the funds at Sense About Science, but under the terms of my compromise agreement I had to wait a year or so.

Here it’s worth adding something on the jobbing research, because I’ve seen that I’m also accused of offering tobacco company BAT help to undermine litigation against them. I’d forgotten about corresponding with them until I saw it. I was doing whatever additional research I could towards the end of the EU Tempus project, as the UK based funds for that declined. I was particularly keen on being able to continue some research I’d begun during my PhD - on the changes to civil litigation, mainly the rise of insurance company claims as opposed to court cases, which was being denied as a rise in litigation but clearly was - and historical changes to the way that blame was apportioned. A lawyer at BAT was among many who’d expressed interest at a seminar I gave. I met him and followed up by sending the research proposal. I didn’t offer to undermine anything, as if I could have. I then felt a bit worried about it. I was in my 20s and knew little of these dynamics, and in the 1990s it wasn’t possible to find everything out with a Google search, so as I recall I asked someone at MORI and a couple of other people who warned me off. I dropped it and though I held some more seminars on my research, it was soon after that, that I went to the crisis management research unit post.     

I’m not sure whether the GM Nation debate had been announced before or after I started at Sense About Science. I attended some discussions about the plans for it, at the suggestion of some of the plant scientists involved. I didn’t think much of what was planned. I probably said as much. I might have written that – there’s nothing on the archive but it’s possible. I don’t remember Sense About Science getting involved in those debates. I think they happened too soon for us. I know I didn’t attend them though I remember discussing them with plant scientists who did. Most of our time in the early years was spent setting up our Advisory Council, establishing what became our database of 5,000 scientists and trying to stop scientists feeling isolated in public discussion. 

Another connection made with Sense About Science being set up is the beginning, around the same time in 2002, of the Science Media Centre at the Royal Institution. This was set up by Susan Greenfield (who had also been in contact with Dick Taverne about his articles and apparently they agreed that there was a need for something to get scientists to contribute more to the media (as well as something for the public more broadly). A connection gets made because Fiona Fox, director of the SMC, is sister of Claire Fox who runs Institute of Ideas. This is a coincidence and not a relevant one, though it’s probably not a coincidence that both Sense About Science and the SMC were set up around that time – they both respond to the problems identified in the House of Lords Science and Technology Committee report into Science and Society, and both Dick Taverne and Susan Greenfield were part of those discussions in the Lords. This report was given to me as my frame of reference on starting. Sense About Science interacts with the SMC, we like them very much but we’re not part of a grand plan! In fact we probably don’t talk as often as we should – it’s one of the worst features of overworked organisations that we go around saying ‘we must have coffee’ to people but don’t arrange it.

It’s perhaps not surprising, given that there were attempts (particularly on the global warming issue) to set up civil society organisations that were actually PR initiatives, that such questions got applied to us 9 or so years ago. Despite all the work and evidence to the contrary since then though, those same conspiracy theories are still being circulated. I didn’t respond much to them at the time.

In retrospect that was probably a mistake. But I’m going to defend this a bit. The first thing is defensiveness and preservation of sanity. Setting up an organisation surrounded by big guns like the Royal Society and an upstart on their patch, we had to show that a better public discussion about evidence was possible. This was intimidating enough without becoming mired in reading and responding to unpleasant personal attacks. It also has a practical element – taking energy away from other work in a small organisation is hard to justify. People have asked me why I didn’t respond to the Monbiot piece in 2003. I see that some people hostile to Sense About Science have taken my lack of response to that as evidence that it must all be true. There’s quite a specific reason and it’s not one I’m very happy to feel forced to share. When that piece came out I’d been 4 days in intensive care at Lewisham hospital as medics tried to stabilise my very sick 3 week old baby enough to operate. Evidence of how strung out I was is that I did seriously entertain a call from the Today programme to go on the next day to debate it. In the end some of my trustees intervened and told me to get my priorities right and to ignore it. They were right of course, but I should have found another opportunity to do it.

The price paid for that is that I now find myself writing pages about my life and other phenomena largely irrelevant to Sense About Science. What might be considered relevant are other current roles that I have, which I declare on my internal declaration and are stated publicly on my biography. These include: Trustee, Centre of the Cell; Commissioner, UK Drug Policy Commission;  Friend of the Royal College of Pathologists; Trustee, Jill Dando Institute, all on our website.

So there it is. Few of us, unless we were marrying into the Royal family, would expect to lay our lives out for scrutiny as though everything we have ever done or places we’ve worked would be directly relevant to what we do ten or twenty years later.

At this point, I don’t intend to write about this again. It’s not enjoyable to write about myself and highly distracting, it’s not the start of correspondence and if there’s a bit of provocative speculation, I won’t be responding. Of all the things going on at Sense About Science just now – the public’s Ask for Evidence campaign, the uncertainty working group, the research into pregnancy and health, the medicines work in Liverpool, Voice of Young Science investigations, environment and health data, truth about lie detectors –  I am far and away the least interesting. Please support and get involved in that work.