Richard Lehman: Shared decision making—essential but hard to measure

What might be needed to see shared decision making become a reality?

Shared decision making is a good thing. Here is how the authors of an updated Cochrane review on interventions for increasing the use of shared decision making (SDM) by healthcare professionals put the argument:

“Shared decision making is said to be desirable because patient involvement is accepted as a right and patients in general want more information about their health condition and prefer to take an active role in decisions about their health.”

So that’s three reasons:

1) SDM is a human right. This is an absolute statement. Our bodies belong to us: in fact they are us. Any decision about them needs to have our informed consent. “Nothing about me without me” was a principle declared by the NHS about a decade ago, and it remains valid though not always adequately implemented.

2) Patients in general want more information about their health condition. This is a less absolute statement, and rightly so. Patients vary a lot in how much and what sort of information they want, and finding out about their individual preference for knowledge is actually part of the professional’s role in shared decision making. This applies to diagnosis as well as treatment options.

3) Patients prefer to take an active role in decisions about their health. This may or may not be true of each individual and each decision. The offer of an active role needs to be explicit (that’s the human right issue) but there is no compulsion for the patient to shoulder the burden of each decision. “That’s why I’ve come for your opinion, doctor” is a perfectly valid response: so is “I need more information and time to think about it and talk to my family.” Shared decision making does not imply that every consultation must consist of throwing information at the patient in order to end with a definitive joint answer.

The authors go on to say that “The aim of this review was to find out if activities to increase shared decision making by healthcare professionals are effective or not. Examples of these activities are training programs, giving out leaflets, or email reminders. Cochrane researchers collected and analyzed all relevant studies to answer this question, and found 87 studies.”

That is an awful lot of studies trying to cover a very varied group of activities intended to increase shared decision making. The reviewers include several of the most prominent and long standing advocates of SDM, and they must have been sad to reach this conclusion at the end of their efforts: “It is uncertain whether any interventions for increasing the use of SDM by healthcare professionals are effective because the certainty of the evidence is low or very low.”

Lots of questions, few answers

So full marks for effort and honesty, but where does that leave us? Certainly with lots of questions and few answers, which is deeply frustrating at a time when SDM is being increasingly advocated as a fundamental principle in all health systems. If we don’t know how to promote it, how can we hope to see it become a reality in all healthcare settings?

In fact, this Cochrane review can be seen more as a reflection of the muddled state of research in the subject than of failure to progress. The broader social movement for greater patient autonomy and open health knowledge is unstoppable, and what we see here is an attempt to capture the small part of it that gets published in the medical literature in the form of interventional trials. This is valuable, but as much for proving the limits of the Cochrane method of systematic reviewing as for the downbeat conclusion it reaches about the quality of the evidence. Complex culture change cannot be adequately measured by looking at simplistic interventions with inadequate outcome metrics.

Shared decision making needs more than just knowledge

Cochrane reviews play a great part in the generation of evidence about medical interventions, and they often form the best knowledge foundation for shared decision making in clinical practice. But knowledge is just one element of SDM. For clinicians to share decisions effectively, they also need a different attitude towards their role, they need a new set of skills, they need better and more adaptable tools, and they need to be provided with the structures and the environment where real personal communication and sharing become possible.

I don’t believe that progress in SDM can be usefully measured by looking at time limited, simple interventions in any one of these areas. If we really believe that shared decision making is a human right, and not some unreachable Platonic ideal, we need to teach it in schools, embody it in shared knowledge tools for patients and clinicians, make it a skill for lifelong learning, and design our health system to promote it. All these things are beginning to happen.

Note: This article was first published on Evidently Cochrane, a blog hosted by Cochrane UK.

Richard Lehman is a retired GP; senior advisory fellow in general practice at the UK Cochrane Centre; and professor of the shared understanding of medicine at the University of Birmingham,

Competing interests: None declared.