Whatever happened to shared decision‐making?

Whatever happened to shared decision‐making?

The British government has placed patients at the centre of its plans for reforming the NHS. The NHS Plan said:

NHS care has to be shaped around the convenience and concerns of patients. To bring this about, patients must have more say in their own treatment and more influence over the way the NHS works. ¹

The document went on to promise more information to empower patients, measures to strengthen patients' choice in the location and timing of treatment, the development of a new patient advocacy service, better practice in seeking informed consent, regular patient feedback surveys, a better complaints system, and patient representation on a whole raft of committees and policy‐making bodies.

These are welcome and long overdue developments, yet an article in this issue of Health Expectations suggests the government may have got the prescription wrong. ² In their study of the extent to which patients and lay people are engaged in quality improvement activities in primary care in England, Susan Pickard and her colleagues conclude that progress has been very slow and the few changes that have occurred have been patchy and superficial. They suggest that the problem with the new policy is that it fails to emphasize the principles of shared decision‐making and the need to promote a new kind of partnership between professionals and patients.

I believe these authors have correctly pinpointed the fatal flaw at the heart of government policy. So far most of the effort has gone into encouraging lay people and members of organized patient groups to get involved in NHS policy‐making by joining committees. There has been a flurry of activity in this regard: one can now find patient representatives on relevant bodies at all levels of the health service and numerous consultation exercises have been carried out. Yet, the impact of all this effort has been disappointing. Patients continue to face paternalistic attitudes and lack of respect for their information needs and treatment preferences.

The problem with the model of participation currently being promoted is that it is upside‐down. While most patients want providers to take account of their views and preferences, only a small unrepresentative minority wants to be actively involved in committees to achieve this. The admirable people willing to take on this role struggle to make their voice heard over the competing demands of the other stakeholders and the need to get to grips with an agenda over which they have little control. Meanwhile, the long list of priorities in the NHS Plan, which delineates the targets against which the various organizations will be judged, has very little to say about the most important issue for most patients, i.e. the one‐to‐one clinical encounter. Instead of beginning at the rarified level of formal involvement in organizations and official committees, implementation of the policy to promote patient‐centred care should have started much nearer the ground at the point where patients and professionals interact.

Most readers of Health Expectations will be familiar with the now extensive body of research into shared decision‐making, including patients' information needs, the evaluation and use of patient decision aids, and strategies for training health professionals to elicit patients' values and preferences and engage them in decisions about their care. A great many articles on this topic have been published in this journal alone, and the world‐wide literature is growing fast. There have been several conferences on the topic, a special issue of the British Medical Journal was devoted exclusively to the theme of partnerships with patients ³ and three books illustrating the potential of the approach and the problems that still have to be overcome have been published over the past year. ⁴ , ⁵ , ⁶ Yet the policy‐makers do not seem to be listening.

Is shared decision‐making doomed to remain the obsession of a few academic pointy heads? What can be done to move it into the mainstream? The first step has to involve recasting the role of the patient. Instead of seeing them as passive recipients of medical care, patients should be viewed as active participants, as decision‐makers, care managers and coproducers of their own health. They will need support if they are to take on this more active role, and many will require encouragement, information, education and even training. Health professionals will need similar support if they are to promote a different type of relationship with their patients.

It sounds a tall order, yet the basicbuilding blocks are already in place. Training strategies have been developed to educate professionals in the techniques of shared decision‐making and there are already more than 200 evaluated decision aids listed on the Cochrane register (www.ohri.ca). A great deal is now known about the gap between patients' expectations and experiences, so the problems can be targeted relatively easily. What is currently lacking is effective professional leadership and the vision to see that shared decision‐making at the clinical level is the foundation stone on which all the other efforts to promote a more patient‐centred health service must rest. Without this, the policy rests on sand and is unlikely to succeed.

Angela Coulter
 Editor