The double standard in research that holds public engagement back

I listened to the radio this morning with rising irritation. Two scientists were locked in debate over the EU Human Brain Project.

Yes, it would be farcical if not true, but the EU (including us I presume as an EU member state) is pumping huge amounts of money into a hair-brained idea to replicate what the brain does with computers.

What made me spit in anger over my high sugar content ‘Frosties’ (sorry, CMO), was the defendant’s protestation that ’15 Nobel scientists’ had backed the project.

Of course they would. In the same way that David Beckham orders the latest Lego kit. Or they indeed help each other clamber up the honours system. They just can’t help themselves.

In a society scarred by so much poverty and human suffering it seems a scandal that we should be wasting yours and my money on fairy tale science of this sort. It is spurious at best and disingenuous at worst for the scheme’s backers to justify it on the grounds that it will help in the fight to beat dementia. Many others things will make a much bigger difference before they’ve even replicated 1/10 of Stephen Fry’s intellect.

The other reason it angers me is admittedly self-interested. I realised last week that I had unwittingly become an apologist for the lack of funding that goes into public involvement and engagement activities. You know the arguments, tight funding round, strategic priorities etc etc.

No more. We must fight our corner very hard now.

Good public involvement and engagement work is likely being strangled at birth. Local patient groups are disappearing or having to go cap-in-hand to others for support. Grant applications for research to help us know what public involvement interventions help research – yes, I said, help research – are spiked. The reason given is that they are not deemed close enough to the patient experience. And the EU Human Brain Project is?

Yep, the double standard against which have fought so long, is alive and well. It is cynicism dressed up as skepticism.

If I had been given £10 for every time I have been asked by
researchers and patients why we don’t run a national public awareness campaign on clinical research I could probably run one tomorrow. Y’know what? We should and we should argue hard for one beginning today. It is a strategic priority if research wishes to save itself from a 7:1 drubbing some time in the future.

The current flawed decision making around support for public involvement and engagement in research is reminiscent of the arguments I used to hear from sniffy Boards about PR and communications twenty years ago.

That all changed with modern media when companies realised they could go to the wall or their share price tumble on the basis of a bad news story or internet driven rumour. Now, heads of comms sit on the Board in the best run organisations. Their CEO’s often cite corporate reputation as the most important challenge they face.

Politically (and I use that word quite deliberately) and practically, public opinion is going to play a very important role in determining how research emerges from the next General Election and the subsequent spending rounds that Government impulses.

Treat the public like fools and we will
look like fools ourselves before not too long.

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Comments

  1. It’s really unfortunate that the idea the Human Brain Project is all about recreating a human brain in a supercomputer has taken off. It isn’t (this seems to be a hangover from the related Blue Brain Project). It is first and foremost an ICT project to try to organise neuroscience data, along with generating some data of its own. Part of this organisation process will involve incorporating the data into models of the brain, and this is crucial: models are central to science, and if we inform our best models with the best available data, then we can make new discoveries. This is useful, even if the discovery is “our models aren’t very good” – we can then make progress by creating new models or adjusting existing ones. Neuroscience data is currently so fragmented and hard to access (the sociology of neuroscience research apparently encourages conflict rather than collaboration, sadly) that we can currently only make baby steps of questionable use. The Human Brain Project, while undoubtedly flawed in many respects – aren’t all large projects? – should help to encourage collaboration between research groups and therefore aid scientific discovery. The “goal” of the project, even though unrealistic and likely to fail, is important for steering this collaboration.

    “In a society scarred by so much poverty and human suffering it seems a scandal that we should be wasting yours and my money on fairy tale science of this sort.”
    Pick any EU funded project that you don’t understand/disagree with, and you can make the same argument. We should of course be sceptical of where funding goes, but this is an appeal to emotion rather than a reasonable argument against funding the project.

    “The other reason it angers me is admittedly self-interested. I realised last week that I had unwittingly become an apologist for the lack of funding that goes into public involvement and engagement activities.”
    They’re funding this but they’re not funding *pet project*?!?!! Fair enough but I think every researcher without enough funding would say this…

    Full disclosure: I am not funded by and have no connection to the HBP (I am currently working in a lab with links, but am not involved with it myself). Of course it should be open to criticism but most of the criticisms I’ve seen have rather missed the mark.

    • Thanks Richard. I appreciate you taking the time to respond to my blog. It’s helpful to have an explanation of the HBP but I find it irksome to say the least when you hear the self-righteousness of some scientists when challenged about their project.

      Saying it must be good because ‘x’ number of Nobel scientists do so, is not good enough in my book – particularly when it comes to public money.
      I would be interested what a panel of people with neurological conditions and carers might have said about HBP if given the chance to review it (as they would be with NIHR funding). Who knows, they might have backed it? On the other hand they might not have or they might have asked the team to think differently about it including its communication.

      I am not going to apologise for bringing emotion into the argument – after all, we are manipulated every day by funders, charities, patient groups to support this or that research. I get that. I did it myself as a chief executive and understand it’s a competitive business. But HBP just feels as though it’s hanging on the coat tails of others just a bit too much.

      Yes, you are right, I probably was succumbing to the same ‘why not me..’ argument. So perhaps the question is, who sets the priorities? And is the process by which this is done as robust as it could be? I don’t think it is.

      Thanks again, I genuinely appreciate you responding.

      • Hi Simon, thanks for your quick reply. Apologies if I sounded a bit forceful!

        “..I find it irksome to say the least when you hear the self-righteousness of some scientists when challenged about their project.
        Saying it must be good because ‘x’ number of Nobel scientists do so, is not good enough in my book – particularly when it comes to public money.”
        I totally agree, science is certainly not short of egos… and the argument from authority is terrible.

        “I would be interested what a panel of people with neurological conditions and carers might have said about HBP if given the chance to review it (as they would be with NIHR funding). Who knows, they might have backed it? On the other hand they might not have or they might have asked the team to think differently about it including its communication.”
        This would certainly have been interesting, but I think the project is too far away from direct medical advancement for this kind of discussion to be particularly useful. Of course, part of the HBP propaganda is that it may help in the development of new treatments, but this is not a core aim, really. It’s unfortunate that relating basic research to medicine is an easy way to improve your chances of getting funded. So we can get a circle of blame going where we blame funders for encouraging this sort of hype, and blame the researchers for pandering to the funders… regarding communication, it has perhaps been a mistake to put so much emphasis on medicine when talking about basic neuroscience. Finding good treatments for neurological disorders is a long way off and very hard because of the brain’s complexity, but there is much crossover between basic and medical research so it comes more naturally in neuroscience than in e.g. particle physics…

      • Hi again Richard. I didn’t think you were being forceful. I actually felt you were being very reasonable and considered. I like your point in response to my second point. Perhaps the lesson for the day is something about being ‘measured.’ Hope you will continue to read and respond. Best, Simon

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