Shared decision making: a common understanding

There is an emerging consensus amongst professionals, patients and politicians that patients have a central role in the decision making process about their health.

But scratch the surface of that consensus and the waters get a little more murky. Helping people share decision making, a review of the evidence considering whether shared decision making is worthwhile, highlights a systematic review finding that more than one in four studies either did not provide any definition of shared decision making or used the term in a different way from usual definitions. Antidepressants and antibiotics are both medicines, yet when, prescribing a medicine we recognise the importance of knowing which one we are talking about. The same needs to ring true when making policies.

At its simplest, shared decision making is a process in which clinicians and patients work together to select tests, treatments, management or support packages that are based both on clinical evidence and patients’ informed preferences. It is based on an understanding that what is important to patients in terms of how treatment choices will impact on day to day life has an equal placealongside scientific knowledge in deciding whether or what treatment to have.

Yet politicians, practitioners, patients and researchers seem content to use the same words – shared decision making – to mean very different things. Many people were dismayed when the Department of Health published Liberating the NHS: No decision about me, without me – Further consultation on proposals to secure shared decision-making – a document which is in fact primarily about choice. The interventions to support choice and the outcomes from it may be very different to those for shared decision making.

In a recent King’s Fund monograph, Al Mulley et al talk of the misdiagnosis that takes place when doctors don’t respond to the preferences of patients and therefore carry out treatment that a patient – if their preferences had been better understood – might have declined. When the wrong intervention is performed on a patient we rightly see this as a serious untoward incident. However, because preference misdiagnosis is hidden, we are often unable to see where it has taken place.

What connects choice of provider, shared decision making, self-management support, self-care, personal health budgets and more, is that they all aim to enable people to be more active in decisions about their own health and healthcare. Each of these approaches may have their place, but none are entirely interchangeable. Each of the approaches may individually enable us to identify a set of necessary structural and process reforms, but understanding them collectively may help us identify the deeper relational reforms that are needed.

We live in an era of disruptive change. The IT revolution, which will go far beyond the smartphone, may be as profound as the agricultural and industrial revolutions. Political rhetoric and personal belief, which increasingly privilege the individual and the community above the state, will continue to help us redefine our expectations of healthcare. The current NHS structural reforms are a disruptive interference that offer opportunity as well as threat.

If we are going to seize the opportunities this disruption brings, we will require a deeper understanding of the nature of the relationship between patients and clinicians. When doctors and patients talk: making sense of the consultation speaks directly to this issue. It offers a powerful analysis of the current relationship – from recognition of the anxieties that drive doctors and patients, to the invisible structures that are natural to the doctor but hidden from the patient, pointing us to the need for a new type of consultation.

Programmes such as MAGIC are testing and demonstrating some of the ways the consultation can change, moving us beyond care decided by provider preferences to one where clinical knowledge acts as a support to patients to make decisions. The work of the teams is informing the Department of Health’s QIPP Right Care Shared Decision Making Programme and is beginning to gain national recognition: this week a team in Cardiff won a British Renal Association award in recognition of its work.

Programmes such as Co-creating Health and Year of Care are showing us how small process changes, such as giving patients their results in advance of the consultation, enable patients to think about their goals and prepare their own agenda in advance of the consultation. They’re also beginning to inform national programmes, such as the QIPP Long term conditions workstream, and to form the basis of work by the Royal College of Physicians and the Royal College of General Practitioners.

We are sharing the learning from Co-creating Health in our self management support resource centre. In the autumn, we will be launching a sibling resource centre, sharing learning on implementing shared decision making.

Truly supporting patients to make decisions about and to better manage better their health and healthcare is a radical agenda that will challenge and change deep-rooted ways of being. Making that change will not be easy and will take time, but a common understanding will bring about the change sooner.

Adrian is an Assistant Director at the Health Foundation.