Expert patients?

‘Doctors need to act on what they already know — that all patients are experts, however uninformed or misinformed they may be about health issues’.1

THIS exhortation in a recent editorial in the BMJ is palpable nonsense. If doctors are obliged to defer to patients' expertise, then what is the point of their medical training? If patients are the real experts, then why should they bother to consult doctors?

Yet this sort of celebration of personal convictions about health — right or wrong — over theoretical knowledge and professional expertise currently has a widespread resonance. It has the ring of the populist rhetoric favoured by the New Labour government in its concern to relate to the anxieties of the middle classes, while seeking to advance its ‘modernising’ agenda by disparaging traditional professions.

It is not surprising to find that the authors play a leading role in a Department of Health initiative ‘to promote patient partnership’. But far from promoting partnership, this disingenuous approach patronises patients, degrades doctors and undermines doctor–patient relationships.

In September 2001, the Chief Medical Officer (CMO), Professor Sir Liam Donaldson approved a report (produced by a task force of which he was chair) promoting the notion of the ‘expert patient’.2 The report's self-conscious insistence that it ‘was not an anti-professional initiative’ raised suspicions that the knight protested too much and that doctors should fear the worst.2 In fact, in substance, the expert patient programmes now being introduced by primary care trusts around the country, based on a model developed in the US by Professor Kate Lorig, have a fairly traditional pedagogical character.3 They seek to develop the confidence and skills of people with chronic illnesses to improve their quality of life and reduce their demands on doctors (one of the programmes' claims to success is that they cut consultation rates).

But the launch of the ‘expert patient’ report took place at a time when the CMO was engaged in a series of wider anti-professional initiatives, notably in relation to the Bristol and Alder Hey inquiries. In December 2001, Professor Donaldson endorsed a report on ME/Chronic Fatigue Syndrome produced by a committee dominated by representatives of patients' groups after most of the clinicians on the committee had resigned.4 Professor Donaldson emphasised that the particular approach to the problems of chronic fatigue favoured by patient activists would be foisted on the medical profession. This elevation of subjective experience and consumer choice over medical science and professional judgement signalled the government's determination to impose its wider agenda on the medical profession. It also revealed its willingness to use unrepresentative and unaccountable groups of self-proclaimed expert patients as a lever to squeeze doctors into line.

The CMO's ‘expert patient’ report skilfully put its central message in the form of repeating ‘an observation often made by doctors’ and other health professionals engaged in the care of patients with chronic diseases, that ‘my patient understands their disease better than I do’.2 This is fair enough as a self-deprecating jest or as a statement of recognition of the expertise achieved by some patients in managing complex regimes of medication or diet. But it cannot be taken seriously as a description of the prevailing balance of knowledge between doctor and patient in general.

A doctor working in any field of clinical medicine is the product of a highly competitive selective process and a prolonged and intensive period of education in the basic medical sciences and further professional training. Very few patients are in a position to become ‘expert patients’, if only because of limitations of time and energy. Campaigners against medical paternalism believe that it is patronising to suggest that doctors may know more about a patient's condition than the patient. But this is as absurd as the notion that any patient can readily acquire the information required to make important medical decisions by spending a few hours surfing the internet. The truth is that it is disparaging to medicine to suggest that expert knowledge and skills can be so readily acquired.

As one doctor put it, wisely, if unfashionably:

‘To suggest that the doctor does not, at least very often, know best is to suggest that theoretical knowledge, prolonged training and long experience count for nothing. In other words, it is a position of pure irrationalism.’5

• © British Journal of General Practice, 2004.