A new report by the Alliance for Useful Evidence outlines what we can learn from the UK-based National Institute for Health and Care Excellence for other areas of social policy
What would you do if innovation could break the bank? This is what faces us with drugs and health. The HM Treasury can’t afford unlimited amounts of the latest cancer drugs or cutting-edge dementia care. With demand increasing year-on-year, by 2021 the NHS in England will be £30bn short of what it needs.
If the public coffers won't stretch that far, a good way ahead is to bring the best available evidence to help choose which drug or health intervention to pay for - or cut. But make sure you go about it in a transparent way. Engage the wider public so it doesn't appear a stitch-up by expert academics, clinicians or politicians.
This is exactly what National Institute for Health and Care Excellence (NICE) does in England. Rather than politicians deciding by gut instinct, ‘postcode lottery’, or Big Pharma lobbying, NICE gathers the best available evidence to help decide what to fund. Decisions can be made on cost-effectiveness through QALYs, or quality-adjusted life-year: a way of measure of health gain from an intervention.
The United States doesn't have a body like the Institute; the US Food and Drug Administration legal standard for approval is merely to determine if a drug, device or test is “safe and effective.” Without these, in United States, the pricing of drugs and devices has become unmoored, and some experts argue, free of health logic altogether.
The dream has been set up a similar body to NICE outside health. In his first media interview as head of the UK civil service way back in 2012, Cabinet Secretary Jeremy Heywood mooted the idea of setting up a ‘NICE-type’ body in social policy.
"the question mark is whether, just as NICE has been very effective in giving a view on drugs or pharmaceutical interventions worth supporting, there is a role for a similar sort of entity or entities in the social policy intervention sphere”
Jeremy Heywood, The Guardian, 10 January 2012
The answer to Jeremy’s question is yes. According to a new report 'The NICE way; lessons for social policy and practice from the National Institute for Health and Care Excellence' there are a plenty of things we can borrow for social policy. And Jeremy’s words have become flesh in the form of nine UK what works centres led and co-funded by the Economic and Social Research Council, Cabinet Office and others.
But for others looking to cut-and-paste the NICE model, you should be wary of some of the myths surrounding it. One common misunderstanding is that NICE uses a strict hierarchy of evidence. This is not correct. They did start off with one – with systematic reviews and controlled trials at the top - but this has been dropped, in favour of finding evidence that is fit for purpose. Another fiction is that they say no to most new drugs, when in fact they actually says yes to 80 per cent. But the ‘yes’s’ rarely make the headlines of the Daily Mail, only the drugs that are turned down.
Below is a list of some lessons I have learnt while writing the report:
Lesson 1: Use a mix of research methods, not just RCTs. NICE does not follow one type of research. As NICE Chairman Michael Rawlins put it, they steer clear of a ‘slavish adherence to hierarchies of evidence’. They are open to mixed methods and seek the most appropriate research for your question. If you want to find out more about how they do it, I recommend this short film by their former Clinical and Public Health Director, Professor Peter Littlejohns, but ignore the slides and focus on audio!
Lesson 2: Ask the public. Research evidence is not enough. It needs to be interpreted alongside value judgements. For example, those undertaking a ‘health technology assessment’ must reflect the ethics, values and culture of wider society. That’s hard in practice, but essential. NICE uses bodies like Citizen Councils to help glean the views of the wider world.
Lesson 3: Work directly with frontline professionals. A big challenge for any evidence is getting listened to. Forcing practitioners to use evidence-based recommendations is likely to be resisted. Networks and personal contacts continue to hold immense sway, not guidance from ‘on high'. Doctors rely on one another to share knowledge and advice. We need to work with the networks of others, like medical Royal Colleges and professional bodies, to help with the implementation gap. Bodies have been set up to help with this, such as the UK Implementation Network and the NICE Implementation Collaborative which brings together academics, and the life science and pharmaceutical industries.
Lesson 4: Create ‘moral authority’ to influence, not the threat of law. At our roundtable with NICE earlier this year we heard that they have developed some soft power and ‘moral authority’ to influence health decisions. Its transparency, openness, and clarity of mission is more influential than legal measures to force people to follow their guidance. In fact, resorting to law could be counterproductive and encourage greater resistance. Many NICE guidance have no specific legal backing, and the NHS has, to some extent, only a moral obligation to follow them.
Lesson 5: Be arms-length from Government. As well as increasing your credibility, robust independence is also popular with ministers who need the ‘body armour’ of bodies like NICE to help make tough spending decision.
NICE will not save the NHS. Or answer how to fix national finances. But organisations like NICE will help politicians make smarter funding decisions. Its approach avoids the well-meaning but ultimately unfair process of the current £280m Cancer Drugs Fund. Its fund drugs that NICE have turned down. By 2016, more than £1 billion will have been spent via this Fund. While it is almost certain to have benefited some desperately ill patients, setting priorities for NHS spending in this way is unfair and inefficient, according to a blog by the King’s Fund think-tank.
The chief executive of NICE Andrew Dillon accepts that nothing stands still and it has to constantly review how it endorses innovative health and care treatments. He has suggested setting up an “office for innovation” that would work with companies during the drug development process to "help them provide the evidence needed to demonstrate value", according to the Financial Times article.
The Institute has adapted and evolved over its decade-and-a-half history. It can do it again. It has the robust research methods, transparency, public engagement and widespread political support to weather any storm, as well as the ability to inspire others outside health to do something similar, when money is tight and innovation needed.
You can join the Alliance for Useful Evidence - it’s free and open to any individual.
The views expressed are the authors own and do not necessarily represent the views of NICE or any other body.