Partnering with patients: how to develop the habit of shared decision making


Jools Symons, Patient and Public Involvement Manager, Leeds Institute of Medical Education, University of Leeds
Kay Henderson, Patient Carer Community member, Leeds Institute of Medical Education, University of Leeds

What do we really want from our healthcare professionals? Let’s start with the obvious, we want to be able to trust them. To trust them to tell the truth and to take notice of our ideas, concerns, and expectations (a communication skills cliché - but true - even if most patients wouldn't use those words). We want to believe that healthcare professionals have a good knowledge base - that they are updated medically with the latest guidance so that we are not being put at risk.

We also want treatment to be right for us and to be responsive to our needs. Let’s look at this story from Kay.

When my chronic disease was really bad, I read about new treatments. I asked my usual specialist, with whom I had a good relationship, if he thought I would benefit from new treatment. He thought I would be a good candidate as I had tried all other treatments and so referred me to the relevant clinic.

There, I was asked to fill in a long questionnaire about my condition. However, I could only answer 'yes' or 'no' and was unable to give a true picture of how I was coping. I scored myself 80 percent on a measure of how my general health was. The healthcare professional who checked my questionnaire was surprised at my 80% score - I explained that apart from this one problem I was generally healthy. In the end, I was deemed ineligible for treatment by the algorithm as I’d scored too high.

My usual specialist referred me back to the clinic a short time later. In the meantime, I had been diagnosed with clinical depression and was on antidepressants, I was given the very same questionnaire as before. I scored everything low as I really wasn’t coping. As a result, I was started on the new treatment and within weeks was feeling better. Within months was out of the wheelchair I’d been in for three years.

Healthcare professionals should not rely on narrowly defined written questions to get an accurate assessment. A face-to-face chat would have allowed me to tell my story and show what my limitations were and come to a shared decision on treatment. I am a person, not a score sheet. Those wasted months when I could have started the treatment made me feel helpless and misunderstood - I lost faith in the system. Getting it wrong can have a significant impact on my physical and mental health and my family.

What we really want from healthcare professionals is shared decision-making and to be partners in our own care. How can they develop the habit of shared decision-making? We think it will come through them using clinical decision support tools to get the right information and then sharing this information with us so we can come to a joint decision. This can only happen when they understand our wants and needs and our perspective. And when they have real insight into us as individuals. This means open dialogue and compromise on both sides. It also means patients and healthcare professionals who have the confidence to agree to disagree on some options. The result will be a good relationship and patients that will be more likely to take responsibility for their own health as well as follow medical advice.

Competing interests