DEMOS

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."