NICE official: Rumours of demise greatly exaggerated

The new government in Britain has targeted the National Institute for Health and Clinical Excellence for change. John Lister interviewed Kalipso Chalkidou, International Director of NICE, at her London office on Dec. 16, 2010, about the coming changes.

Many AHCJ members at the 2009 conference in Seattle saw your presentation on NICE. Can you give us an update on changes started by the new government?
The new government has significant plans to reorganize the National Health Service (NHS) The plans affect NICE. I personally think that’s a good thing. NICE has always had to change as a prerequisite for success in its work.

Kalipso Chalkidou

The new government is very focused on outcomes, and NICE has a central role in developing evidence-based outcomes, and linking those outcomes to measurable indicators of performance. We also will develop incentive schemes – financial penalties and rewards – to help improve performance.

What other changes are you looking at?
The previous government introduced the Quality and Outcomes Framework which is a pay-for-performance scheme for primary care. This is now being reinforced in secondary care. We will also look at various payment-by-performance schemes that assess the best price tariff for services. Purchasing care will no longer be the responsibility of the Primary Care Trusts (PCTs) which have been in place since 2000, but will be put in the hands of local consortia of General Practitioners, who will have the budget to buy health care on behalf of their local population. NICE will help set the standards they will have to work toward. We are also improving the way we write our guidance. Smart searches will make it possible to compile information from across the website. We are also developing electronic decision support systems – electronic pathways that link to both clinical and economic evidence. This keeps the focus on the clinical question and the outcome rather than the product.

Some people worry that the new GP consortia will create even more variation in the level and range of services. In many areas the dominant voice within a local consortium may be from a particular group of relatively well-resourced GPs, which may mean that the needs of more socially deprived areas and patients will be a lower priority. Are there any checks and balances that might prevent this inequality-the so-called postcode lottery?
To be honest I don’t know how the new system will work. I don’t know what safeguards they will put in place: I do think it’s fair to say that people are aware of this. The concern over increased inequality has been widely publicised, and rightly so. Certainly it would be a great shame to go back to the situation that prevailed before NICE was set up, although obviously we have not been able completely to eradicate the problem.

What have you done to work on the problem so far?
In the case of many cancer drugs, we know that patients are getting faster access to these drugs now and that these recommendations are applied across most of the country. Information systems are improving, so we will be better able to monitor the relative performance of GPs in different consortia.

A lot depends on the economies of scale and how many GP consortia there are, with how many GPs in each. Remember patients also have rights under the NHS Constitution, which makes it even more difficult to ignore the evidence and deny people effective treatment.

NICE itself has recently been in the news, as a result of changes announced by the new government. There have been different interpretations of these changes, including one I wrote for AHCJ’s Covering Europe initiative. How do you see the changes and the impact on NICE and its work?
We have talked about standards of treatment, clinical services and social care (long-term care in the U.S.) looking to a continuum of prevention, treatment and care. This is linked with the organisation becoming a more independent entity than before. We will be accountable to Parliament, and we are being re-established through primary legislation. All these things are new and important.

Links across the Atlantic:
For more on how NICE works, see an interview by AHCJ immediate past president Trudy Lieberman published on

What health systems of other countries can teach us: A Health Journalism 2008 panel

Primary health care in the Netherlands: Presentations from Paul Thewissen of the Royal Netherlands Embassy on “Primary Care Physicians and Primary Health Care in the Netherlands” and “Health care reform in the Netherlands – lessons for the USA?”

Bringing international stories home: How to develop, report and write overseas stories that resonate with local readers: Listen to this panel at the “Covering Global Health – A Primer for Journalists” event in Seattle, May 2 & 3, 2008.

In January 2008, AHCJ presented adiscussion with Andrew Dillon, of the National Institute for Health and Clinical Excellence. He met with British and American reporters to discuss his agency’s role in advising the NHS on the cost-effectiveness of medical treatments, and some of the subsequent rumbles across the Atlantic.

The California Health Benefits Review Program is one state organization in the United States that is looking at the evidence.

Did the pricing policy attract the most attention?
Yes. Obviously the thing that attracted the most attention was the announcement on the pricing policy. The UK right now is a price-taker, not a price-setter: in the UK and Germany, the drug companies set the price for a new drug. I think we are the only countries in western Europe that do that: most governments negotiate prices with drug companies. In the UK, based on the price, we say whether or not we believe the drug is cost-effective for its intended application and population. The government is now saying it will, with NICE’s input, review all drugs, not just a select group of them, and it will do this in a way that begins to set the price, negotiating with the drug company.

Can you describe some of the factors that will go into these negotiations?
There will be different inputs into this negotiating process in addition to an evaluation by NICE. These factors include disease burden, degree of innovativeness and broader societal impact although we don’t yet know how these will be factored in. A recent article in the Financial Times speculated that it might combine a NICE appraisal plus issues of innovation and other factors.

Then the Department of Health will negotiate with the company on the price. Hopefully it will be fixed at a level where we – the country, rather than NICE – accept that it is good value for money. NICE will still issue recommendations and best practice guidelines that the GPs will be able to use. There may also be a signal on the price.

Does this actually give NICE more influence? It has been widely interpreted especially by the Daily Mail [a right of centre mass circulation tabloid] as handing the decision back to GPs whether or not they or local hospitals should prescribe expensive cancer drugs.
Yes the Daily Mail article a month or two ago was something like “Penny pincher NICE is abolished”. But if you scroll down and look at the comments most Daily Mailreaders were actually pointing out that this was not a good idea. This might have tempered the enthusiasm of the editorial line a little.

I don’t think I have seen many articles quite so damning of NICE since then.

But I think it’s clear that NICE has been extremely controversial because of this issue.

Has this criticism been good and bad for NICE?
It has been good for raising awareness of the issue that some of these drugs cost a lot of money, and if they are to be used, there may have to be trade-offs. There are other services we cannot afford because we are paying for these drugs.

It’s also been good in bringing the drug companies around the table. At first they refused to play, but they have changed their approach. We now work well with most of them. It’s also been good because there has been a dampening effect on the prices of new drugs. Maybe the drug companies think twice on their pricing policy. On the negative side, it has focused everyone’s attention on appraisals of drugs when NICE is doing lots of good work with clinicians and patients in many other areas.

What are some of them?
For example, we developed a huge new set of guidelines on treatment and social care working with clinicians and professionals in a very good and detailed piece of work with recommendations for outreach clinics, helping care givers and many other things. We have been seen only as the just the body that rules on drugs, and I don’t think that’s a good thing.

Will the government say yes to every new drug that comes on the market?
The government is not saying they will now say yes to every new drug. They can’t really; the public will start to notice how fast the drugs budget is increasing.

However, NICE’s committee will not be so powerful in recommending yes or no on new drugs. We didn’t really enjoy saying no to the relatively small number of drugs we did not feel were value for money. So I don’t think the change is necessarily a bad thing. It’s important to remember that it was when NICE’s said ‘yes’ that it became mandatory for PCTs to make the drug available: when we said ‘no’ it was always left up to local PCTs to decide. GPs will be in exactly the same situation now: they will be holding a limited budget, and they will need to look at the price and the NICE guidance in making their decisions.

Are you saying that NICE has never been just about drugs. ? The information rack in the foyer has a whole range of leaflets and information on surgical techniques and treatments. What’s this about?
It’s partly our fault that we have not managed to get across the range of issues that we take on. We have not been up-front enough, maybe not made enough effort to inform journalists and the media, without whom we can’t inform the wider public. We have now formed fantastic relationships with clinicians, with patients’ organisations, in public health, education, and other areas. We need to sell this a little bit more. We have not been very proactive in selling anything. We have just been doing the job. But then again this is what we are paid by government to do—the job, rather than PR. The press concentrates on this bit or that bit, and we respond. Now is a good opportunity to say that drugs are not all that NICE is about.

Give us another example.
Around the world you find that people are excited about being able to log on to the NICE website and its ‘NHS Evidence’ and access what is more or less a Google for health care, an accredited source of information, available free of charge. We are doing lots of good work. But in the media it seems that everything boils down to whether we said yes or no to this cancer drug.

The whole idea of having public health, guidelines and appraisals of drugs and treatments under the same roof is to bring these issues together and show the trade-offs. If you only concentrate on drugs, you can’t really do that.

How would you characterize the reporting about NICE?
I think things have improved. There is a more mature debate in newspapers and sometimes on TV about price, money, value and health. There have been some intelligent interviewers on TV asking questions which maybe they would not have asked ten years ago. But if you look at the recent reports in the press about NICE being “abolished” and so on, it would have been good if the press had asked us to respond. It would obviously have been difficult for a journalist purely picking up the news from the outside, as it were, to be aware of all the nuances and write a perfect story on what was happening. But it would have been much more beneficial to have this story covered in a different way, with somebody asking us what we are doing, and what’s happening with pricing.

How do you respond to the critique from the left, from Polly Toynbee of the Guardian who argued that NICE was being removed from the decision process on new drugs, and thus allowing drug companies to more effectively target GPs with their new products?
Isn’t it funny that both the Guardian and the Daily Mail both chose to run with the headlines that we are effectively being abolished? It’s true that there are these fears, and some of the messages that Polly Toynbee wanted to get out there about the valuable work that NICE does and its role are useful.

Her story also concentrated on the issue of variation, or the threat of growing variation in the access to drugs between one locality and another.

What might also help is a more interactive approach in which journalists start from the fact that we have this organisation, and investigate a little of what we do, and from that, try to establish what maybe we do wrong and what we might do better. It would also be good for reporters to focus on the inflation rate in the drug industry, and the possibility of the NHS beginning to apply pressure to prices and apply its purchasing power more effectively, rather than the more sensationalist line of NICE being “abolished.”

What else should journalists focus on?
There could be a debate about how we do what we do, but there also needs to be a recognition of what was wrong with the system before NICE was established. It would be a great shame if we were to lose the knowledge we have built up and the greater degree of sophistication which has been developed in appraising drugs and treatments. But the point I am very keen to emphasise is we are not actually losing the agency. We are not being abolished. NICE and its work will continue. We will influence a much larger proportion of the NHS budget than before, and we therefore have an even bigger opportunity to do good. Rumours of our demise have been greatly exaggerated!

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