NICE has come of age. At 21, it is a national treasure. But like other national treasures, from Alan Bennett to Grayson Perry, we forget how subversive and challenging they appeared at the outset.
I was at a seminar recently, organised by Kaleidoscope and HSRUK, to reflect on what the NHS can learn from the success of NICE—how it came to be and how it survived political and public storms, and how it continues to flourish in a climate that is anti-expert and anti-science.
David Haslam reminded us that the medical profession was suspicious of NICE in the beginning. They saw challenges to clinical freedom in prescriptive guidelines. But the timing was right. A new government with a modernising agenda—in John Kingdon’s terms, a “policy window.” It started against a backdrop of concern about postcode lotteries, a growing number of new high cost technologies, and a need for government to distance itself from tricky decisions about which treatments to fund in a cash-strapped service.
At the same time, NICE rode the wave of the nascent evidence-based healthcare movement. In the late 1990s, the ideas of Archie Cochrane—“always assume that a treatment is ineffective unless there is evidence to the contrary”—were only starting to take fruit. The work of Iain Chalmers and others in ordering evidence on pregnancy and childbirth and making explicit clinical practices which were not based on good research was seen as disruptive—”an obstetric Baader-Meinhof gang” to quote one medical critic of the time. I talked about how NICE couldn’t have happened without the social movement of evidence-based medicine and the work of Michael Peckham and others in setting up a national health technology assessment programme in the 1990s. This fed the guidelines and technology appraisal activities with pragmatic high quality UK-based trials.
Not only that. James Raftery talked of the way in which health economics took centre stage as a discipline, with a standard tool in cost per Quality Adjusted Life Year (QALY) (with a nod to Alan Williams at York) that became common and accepted currency in drug appraisal. As an aside: He talked too of the influence of the lately departed chief economist Clive Smee. Current advisers to No 10 have not invented numerical literacy in government circles. This is not universal. We learned that cost per QALY is seen as ethically repugnant in Germany, as well as unpalatable in the US.
Nick Timmins who has completed a very readable history of NICE, talked about the part of luck in its success. In particular, he provided a compelling story of how Relenza proved a very fortunate first test case for the new organisation. At the time, evidence suggested only moderate effect in shortening symptoms by a day with little impact on those most vulnerable to influenza. The judgement was taken not to fund it, upheld (bravely) by the government of the time, and despite the bluster of industry threatening to take business elsewhere. Not only that, but the ability to review and amend the decision as new evidence came to light.
What became very clear was the strength of the processes, as set out in the manual, for translating evidence into decisions. This both makes explicit the strength of evidence and, in its absence, robust approaches to seeking consensus and making reasoned judgements. Gillian Leng, deputy CEO and the director of health and social care for NICE, noted that the transparency of decision making was key to success. As was the commitment, from the start, to meaningful engagement of stakeholders. This included new approaches to determining social and ethical values underpinning decisions, through citizen councils. As someone said, people trust the processes, even if they don’t agree with the outcome.
And we all reflected on the stability of leadership. NICE have had one chief executive and only two chairs in over twenty years. Is that unparalleled in high-profile health bodies?
We talked about some of the challenges. How can gold standard single condition guidelines deal with complex patients and multimorbidity? Some of the service delivery and workforce problems have proved less tractable to NICE’s approaches than clinical pathways. Deliberations take time, which can seem out of pace with a technology push. And we are only starting to grasp the dilemma for a cash-limited service of new treatments with six figure price tags for single patients.
So, there may be rocky times ahead. But in a world in which people look for simple answers, we can be proud of an institution which celebrates the complexity of decision making. It has developed sophisticated processes to assess evidence, involving many stakeholders in an open way. And that is far from easy.
Tara Lamont is director of the NIHR Dissemination Centre. The views expressed here are her own.
Competing interests: None declared
A webinar with David Haslam and Tara Lamont following this event can be downloaded here https://www.youtube.com/watch?v=a6DF6VfcY4M&feature=youtu.be Other free face to face events will be held around the country on successful change in the NHS, from infection control, day case surgery, to non-medical prescribing https://www.kscopehealth.org.uk/project/changing-healthcare/