Ideas around shared decision making are well developed but our recent work shows that many patients are unaware of its potential benefits.

In our recent online survey, we found a mixed picture: around half of the respondents said they had experienced aspects of shared decision making. But the number of people who took part in our survey was relatively small (340 respondents), and as most were readers of our weekly email newsletter, and chose to take the survey, the assumption is they had some awareness of shared decision making.

The GP was very supportive. On referral to secondary care there was no shared decision making, advice was given without explanation and differed from the GP advice.

Low levels of awareness

This means that the respondents to our survey, almost certainly more than in a typical group of patients, would be aware of their rights and options in consultations with clinicians, and willing to have discussions.

Several respondents described receiving treatment or test results as ‘help’ in talking to professionals. While this may be a good example of clinicians giving effective information and supporting patients to manage their condition, it does not amount to support to have discussions about treatment options.

This suggests there is not always a clear understanding of the concept of being supported to discuss and make decisions about care and treatment, as distinct from more general medical support of the type that respondents often told us about.

Such a mixed set of results among even a relatively informed group of patients is disappointing, but not unprecedented; other researchers in shared decision making have made similar discoveries.

We also ran workshops made up of patients and medical professionals as part of our shared decision making project. The issue of awareness was discussed at length in the workshops.

No face to face consultation. I could tell the doctor/ consultant was using pre-set questions for a set of conditions, but didn’t feel he was concerned about me as a real person. Felt like a paper exam was taking place.

Avoiding jargon

Some participants were concerned that to many people ‘shared decision making’ was jargon. From the perspective of the Patients Association and our goal for patient partnership at all levels of the health system, the key issue is whether patients can work with clinicians and professionals to reach a decision together about care, rather than the label applied to the process.

I had the impression my doctor was uncomfortable at being questioned so closely.

But if shared decision making is reduced to jargon, it will open the way for it to be made tokenistic and implemented only as a tick-box exercise.

Read the full report.