HEALTHCARE: NICE chairman Prof Sir Michael Rawlins talks to Ian Hall about public input in the NHS Citizens council

As an organisation at the heart of the Government's health service modernisation drive, the National Institute for Clinical Excellence (NICE) has become impossible to ignore.

Since its inception almost four years ago, NICE - which has certainly become the most memorable acronym of the raft of New Labour's new health service institutions - has assumed responsibilities that mean its decisions increasingly impact on anyone working in healthcare comms.

The institute's planned re-location of its staff to larger offices next month reflects an influence that will continue growing. Pharma companies in particular - many of which have had rather fractious relations with NICE after the institute has decided against allowing their drugs' availability on the NHS - have increasingly had to tune in to the NICE agenda.

Talking to PRWeek in the current offices on London's Strand, NICE chairman Professor Sir Michael Rawlins, who is also professor of clinical pharmacology at Newcastle University, says: 'There's more and more to do, there's more and more coming on stream - we have not even begun to find a plateau.'

NICE was set up in March 1999 to standardise care across the NHS. Previously, health authorities had largely been left to decide whether to adopt new treatments, with provision being inconsistent across the country ('postcode prescribing').

Rawlins acknowledges that such postcode differences - which 'were institutionalised and unnecessary' - are unlikely to be totally eradicated, given that 'geographical differences in access to care are inevitable'.

He says the major challenge for NICE is attempting to change doctors' prescribing habits, which, he says, is 'not easily accomplished'.

In addition to NICE's responsibility for appraising new and existing technologies - 'advising the NHS on whether particular drugs or devices are clinically effective and cost effective' - it also advises on the treatment of individual diseases and conditions.

The formation and launch of the Citizens Council - which Rawlins describes as 'a rather novel departure for the UK, in fact, a rather novel departure for anywhere in the world' - is one of the most significant developments within the past six months.

Its aim is to 'assist in the development of the social value judgments that should underpin NICE's guidance to the NHS' and is comprised of 30 members of the public with no special scientific knowledge and no links with the NHS or pharma firms.

Although pharma companies are represented on NICE's 'guidelines advisory committee', and also make representations during appraisals of individual drugs, the Citizens Council will function in isolation from them. However, pharma companies will be keeping a close eye on any policy changes that are ascribed to the views of the panel.

The Citizens Council, which Rawlins describes in the context of 'deliberative democracy', is at the heart of NICE's aim to engage with public views on the health service.

The panel is drawn from all age groups and social backgrounds and is scheduled to meet twice a year to deliberate on ethical dilemmas put to them by the NICE board - essentially helping to decide where the NHS invests time and money.

Rawlins says: 'It came about at the time the NHS Plan was being developed. I was talking to Simon Stevens, who was then (health secretary) Alan Milburn's special adviser, about how to engage the public in a useful dialogue that would help us develop our social value judgments.'

The panel's first meeting took place in November last year in Salford, where the topic discussed was 'determining clinical need'.

After each meeting the Citizens Council's recommendations are presented to the board, which incorporates its response into a 'working document' - Rawlins is currently penning the first draft - setting out NICE's position on moral issues.

As to use of such a document, Rawlins says: 'I think it may become a touchstone for other policy planners in the health service to say: "Well, this is how NICE does it." They may not agree but at least they can see the basis for how we do things.'

Those value judgments can provide valuable feedback to healthcare communicators.

On the results of the first meeting, Rawlins says: 'They came out with some remarkable insights. One of those was self-induced disease should not be considered in determining priorities. In other words, you should not treat smokers any differently from non-smokers.'

At its next meeting in Cardiff in May, the Citizens Council will discuss the subject of age and the extent to which the relative age of patients should affect the allocation of the health service's resources.

When asked how he feels NICE is perceived by pharma firms and healthcare PR agencies, Rawlins opts to refer to NICE's 'massive influence' in the US: '(NICE chief executive) Andrew Dillion and I have just spent a week in the US talking to some of the largest pharmaceutical companies and they had heard a lot about NICE. They said we had a massive influence across the world.'

When presssed on NICE's reputation closer to home, Rawlins replies: 'I rather think the pharma companies wish we were never invented. They perceive us as another regulatory step but we are not.'

'Many of them - this is what they tell us privately - recognise that what we're doing at NICE is something that every healthcare system in the world is going to end up doing,' he says.

Rawlins says NICE 'does not want to go round marketing their products for them. There's half the world who would then think we are in the pockets of the pharmaceutical industry - there's half the world who think that anyway.'

NICE's comms department - headed by Anne-Toni Rodgers - has grown in size in the past four years and there are additional issues in the pipeline on which it will need to communicate.

NICE is this month assuming responsibility for advising the NHS on the safety and efficacy of procedures such as keyhole surgery and ultrasound.

It is also likely to gain increased responsibility for advising on issues such as medical foods and sunscreens (which can be prescribed on the NHS for certain medical conditions), and the Department of Health is considering whether to hand the institute responsibility for screening and vaccination issues.

Rawlins describes NICE as a 'virtual institute' that needs to communicate with professionals working in everything from advisory committees to royal colleges, across England and Wales.

In terms of NICE's public profile, indeed whether the institute needs a public profile, Rawlins is bullish: 'Whether it's necessary or not, it's going to happen.'

He explains: 'If we say "no" to something, there is a big row. The PR men from the companies or the professions or the patient associations will get their soundbites in the Daily Mail.'

'It's important for the public to know that when we say "no" we are saying it honestly and with very good reasons, either because it doesn't work very well or because by recommending its purchase for the NHS we are denying thousands of people other things for their healthcare.'

It is the issue of 'opportunity cost' - that 'there is a finite limit to healthcare money and rotten decisions have to be made' - that lies behind claims that NICE has been set up as a rationing device for the government.

Rawlins says transparency is crucial as NICE strives to get its message across to parties such as patient groups: 'We have to struggle to make sure we get best value,' he says. 'I think people are, broadly speaking, increasingly aware and it's because we have been very transparent about what we have been doing.'

And, he adds: 'I don't know of any organisation in the health service that is so transparent in what is a very, very delicate area'.

In contrast, Rawlins refers to the Committee on Safety of Medicines, of which he was chair from 1993 to 1998.

'If you want a closed shop, that's it,' he says. 'The difference between there and here is 180 degrees.'

With NICE under pressure from the pharma industry and patient groups, to name just two parties, ramming home the transparency message will keep the institute busy as its responsibilities continue to expand.

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