Demos Project : Experts

The expert patience programme

jack.stilgoe@demos.co.uk ( Jack Stilgoe ) — Tue, 12 Dec 2006 17:04:59 -0100

When you have a hammer of a pamphlet, every story looks like a nail. On Friday, we launched The Received Wisdom - Opening up expert advice. In the papers, Richard Doll's (expert par excellence) reputation was taking a battering, vCJD was back in contaminated blood and the expert report of the TeGenero inquiry was described as a whitewash. At the same time, the mobile phones health scare was sinking its nails into Wi-Fi as it slowly died.

It was nice to be reminded of the relevance of a new part of Demos's work. At the launch, Sir John Krebs provided a fascinating insight into issues of expertise and evidence. (He has now stepped out of the FSA, which sat at the eye of the post-BSE storm). Unpicking the arguments, we were helped by Sue Mayer from Genewatch and Bill Stow from Defra. Friends old and new asked difficult questions, not least the timeless philosopher of science Jerry Ravetz, whose latest book we launched two weeks ago. Much of the conversation turned on a critique of the rhetoric of 'evidence-based policy,' which has in a motherhood-and-apple-pie-ish way become a mantra, without much consideration of its politics - or anti-politics.

It's a mark of how far we've come that the messages of the pamphlet, which ten years ago would have been considered radical, can be embraced by establishment experts and civil servants, while being politely criticised by NGOs as "too polite."

Our arguments are still new to many, however, as I was reminded by hecklers in the Today programme's audience. They were recording live at the Royal Society with the great and the good - Krebs, Rees, Hawking, Greenfield, Wolpert. I was talking about the 'scientists of the future', contending both with Humphrys and a rather defensive early-morning crowd. Bracing.

NICE drugs, if you can get them

jack.stilgoe@demos.co.uk ( Jack Stilgoe ) — Wed, 11 Oct 2006 11:48:13 -0100

Lead story on the breakfast news this morning was the battle between Alzheimer's patients and NICE, the body set up to "rationalise" the provision of medicines. We talked about this case a year ago, when the guidance was being reviewed for the first time, in The Public Value of Science. We were particularly interested in the involvement of the upstreamly-engaged Alzheimer's Society in the debate, via their QRD network.

But the example is perhaps more relevant to our forthcoming publication on experts and expert advice. NICE is packed with experts, and its role is ostensibly scientific. But many of the conversations it finds itself involved in are deeply political.

We'll be launching the new one in December. Send me an email if you'd like to know more...

This is the passage from The Public Value of Science (Sept 2005).

"The QRD network has also given carers a voice in wider discussions of research and treatment. Earlier this year, the National Institute for Clinical Excellence (NICE) recommended withdrawing a clutch of Alzheimer’s drugs from NHS treatment. The drugs were seen as overprescribed and not cost-effective. The Alzheimer’s Society, which had earlier helped to convince NICE of the drugs’ value, challenged this recommendation. They accused NICE of ignoring the experiences of thousands of carers and patients who benefit from these drugs, in the quest to cut costs. NICE was created to provide an ‘evidence-based’ assessment of who gets prescribed what. But, as with so much that is justified under the banner of ‘evidence’, its definition is too narrow to allow it to engage in conversations about what really counts to people. It is tongue-tied when it comes to discussing issues of public value.

Ted Freer knows that Aricept®, one of the drugs in question, is not going to save his wife’s life, but it has lessened some of her symptoms and provided a ‘window of respite’, making it easier for him to care for the woman he loves. These benefits are far removed from NICE’s narrow framing of the issue. The voice of the Alzheimer’s Society, and its network of carers, is injecting social intelligence into the otherwise desiccated logic of scientific and economic argument. Thanks to the QRD network, at the time of writing, the NICE guidance is being reviewed."

Knowing and Doing

jack.stilgoe@demos.co.uk ( Jack Stilgoe ) — Fri, 24 Mar 2006 13:31:21 -0100

I'm dead excited about a new project we've just begun on experts and the public. The good folk of Defra have asked Demos and Liverpool University to consider how lay people can play a part in expert scientific advice.

Many moons ago, when memories of BSE, GM, mobile phones and MMR were still fresh, I looked at this kind of thing as an academic. Social scientists have been saying for years that we need to think about expert advice differently. Thankfully, our project is being led by Alan Irwin and Kevin Jones at the University of Liverpool, who have been saying it better than most.

Having paddled upstream, we've now got the opportunity to see how things look in the murky world of evidence-based policy. The question is, when we can't get an ought from an is, and when it's sometimes not clear what the is is, how do we approach the complexities of knowledge and decisionmaking? I've got a short piece in the latest issue of Science and Public Affairs (what do you mean you don't read it?) looking at this with respect to the recent smoking ban.

With this project, I'm keen to make arguments about science and policy make sense to the people who work every day with the problem of knowing and doing - be they policymakers, doctors, scientists or experts. There's a lot of talk about public engagement with science, and a lot more about evidence-based policy. How can we do both at once?

Knowing your unknowns

paul@paulmiller.org ( Paul Miller ) — Mon, 11 Apr 2005 12:18:48 -0100

Intriguing piece in Scientific American by three RAND bods about a new approach they've developed to thinking about the future. It concentrates not on prediction of the future but working out the implications of actions taken today on the long term future by testing them against a load of scenarios to see which one is most 'robust'. More here.

[via Future Now]

Illness, Expertise and Charlie Hodgson's floppy foot.

jack.stilgoe@demos.co.uk ( Jack Stilgoe ) — Mon, 14 Feb 2005 09:56:10 -0100

There was some ham-fisted criticism of such policies on the grounds that they somehow undermined the authority of science. But, more interestingly, there were valid questions about how such attempts to engage publics should be implemented. Many people's criticisms seemed to suggest that the top-down programme forced both patients and doctors to behave in a certain, prescribed way. This raises important questions'

Should public engagement experiments be seen as instruments or opportunities? Real public engagement might be more effective if doctors and patients (or scientists and publics) are given the flexibility to engage on their own terms.

Do programmes like the EPP really allow new questions to be asked (about relationships, knowledge, treatment) or are they just attempts at public legitimacy?

Behind the discussions that unfolded, as with any discussions about science and society, lay some firm attachments to na've ideas of what Science and The Public are. Lots of hastily-defrosted arguments about the value-neutrality of science and the failings of the great unwashed.

(I subsequently lost myself on the Barbican's skyways en route to the very excellent Heritage Orchestra. Needless to say, watching them play was more enjoyable than a day spent bemoaning public irrationality).