Statistics from Altmetric.com
In his thoughtful ‘reality check’ on the future of healthcare Roy Moynihan lists 10 reasons to be optimistic.1 His first four developments are particularly pertinent to the concerns addressed in Smith and Wessely's paper.2 Moynihan cites the drive for an evidence informed approach as a ‘check to an overconfident medical establishment’. His second reason introduces fairness and justice and the desire to reduce the variation in healthcare—epitomised by the ‘postcode lottery’. He goes on to consider the new emphasis on patient-centred collaborative care and how the focus has shifted from the professionals who deliver the care to the people receiving it. Accompanying this trend, and often driving it, he cites the rise of consumers’, or citizens’ groups and he has a special mention for palliative care which he feels has moved away from an unhealthy emphasis on ‘heroic and unnecessary technological interventions’ in order ‘to turn to simpler forms of care that relieve suffering rather than trade in false promises or miracle cures’.
But perhaps he underestimates the fundamental frisson between what has been traditionally called the science and art of medicine. The Greeks understood the stochastic nature of healthcare—where a patient treated according to the best evidence of the day would deteriorate and another patient treated carelessly would flourish.3 Even William Blake was cautious about the limitations of science (see figure 1 for William Blake's quote and painting).
Despite modern medicine being a scientific process, friction is never far away. Take for example the National Institute for Health and Clinical Excellence (NICE)—probably the best international example of an institution seeking to base its guidance development programmes on the best available evidence. Yet, even it accepts that social as well as scientific judgements need to be taken into account4 and have developed detailed procedures to ensure that both these perspectives are addressed equally.5
Yet as Mechanic states:6 ‘Research is a form of currency as varying interests negotiate a political resolution, but research is almost never definitive enough to resolve major issues on which strong political interests disagree’. So how far should you go to reach agreement? In this context ‘seeking consensus’ is normally aimed for. However it should be remembered that consensus decision-making seeks the consent, not necessarily the agreement of participants in resolving objections. It is used to describe both the decision and the process of reaching a decision. Sometimes it can be more loosely (and incorrectly) interpreted as seeking to take the ‘middle road’ between extreme positions. If this latter interpretation is adopted by stakeholders, it can lead to frustration. NICE consultees can be ‘upset’ when the final guidance does not reflect their submissions and comments on draft guidance that is, the guideline developers do not seem to have tried to align the final recommendations with their viewpoint. This is a misunderstanding of the NICE process which seeks to understand all views and appreciate all the issues in order to make a judgement on the best estimate of effectiveness and cost-effectiveness. The guideline developer's job is not to find a compromise solution.
So what is to be done? Well first you need to ensure that you have robust processes in place to allow these differences to be played out and the second is to be clear and specific on what social values are most important to the key players.
Regarding the second condition, ‘social values’ and how they influence guidance and prioritisation decision making is ill understood but a new research programme has recently been established to respond to this gap.7 In this context social means the values expressed by society or communities. Such values include justice, solidarity and patient autonomy. Even scientific criteria such as clinical and cost-effectiveness presuppose social values in the assessment of the quality of life that an intervention will deliver and also include the level of uncertainity around estimates of clinical and cost-effectiveness that are acceptable. Of course social values are also relevant to the policy processes by which recommedations are made, since procedural values affect the perceived sense of legitimacy of decisions. Such procedural values include transparency, accountability and participation.
However it is not only patients and the public that have ‘values’—so do professional groups. Their reaction to guideline recommendations that go against the ‘percieved wisdom’ can be equally dramatic. Witness the reaction of the Pain Society when NICE issued its guideline on the management of low back pain—they forced their new president, who had advised NICE, to resign8 or the cardiovascular world which suggested that NICE guidelines on the prevention of infective bacterial endocarditis were actually increasing the level of disease.9 ,10 This latter debate was only resolved when the NICE recommendations were substantiated by further research (new data collection was one of NICE's original recommendations).11
Using this double approach the NICE guidelines programme has produced over 150 guidelines in its first 12 years and was only once subject to a judicial review—which it won on all counts. Not surprisingly it was Clinical Guideline number 53 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy).
Competing interests None.
Provenance and peer review Commissioned; externally peer reviewed.
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.