We hear a lot spoken these days about the importance of patient involvement in clinical research. Not simply in the sense of being subjects in clinical trials, important though that is, but in the sense of providing intellectual input into study designs and protocols in the form of patient experience. To people like myself with a chronic neurodegenerative (and let’s not forget incurable) illness, this makes absolute sense. After all, who knows better the needs of patients than patients themselves? Certainly our consultants will know more about the neuropathology and biochemistry of the condition (well let’s hope so). But that doesn’t necessarily translate into an in-depth visceral grasp of the impact of the illness. That can only be truly understood from within. As a friend of mine once memorably said “if you haven’t got it, you don’t get it”. And ultimately of course, she is right. No hours in lecture theatres, clinics or case studies can truly help the doctor to understand the true patient experience. In essence, our physicians know what Parkinson’s looks like. We, the patients, know what it feels like.

Bridging that gap, between patient experience and physician record, is a charge laid equally at the feet of both communities. Communicating the inner experience more effectively is the task of the patient community. Finding ways to open windows into that experience is the ultimate challenge for medicine in general. It is at the heart of diagnostics after all. These are the challenges that we must address because they are at the centre of understanding the condition. Either alone is the sound of one hand clapping.

But surely we know enough about the patient experience to understand the condition? Clinicians are surely well enough trained to ask the right questions? Not necessarily. Let me give you an example.

I was at a conference of neurologists (yes I know I’m not a neurologist but I am quite persuasive as a gatecrasher). One of their number was presenting a case of a young patient he had observed in clinic and that the patient’s home.

Amongst other things he observed that the patient had a strong unilateral dystonia in his hand when lifting a wine glass to his lips. He noted it down as a symptom but did not investigate further. Had he done so, or even spoken to the patient about it, he would have learnt that this was not a unilateral dystonia (i.e. an uncontrollable cramping of the muscles) but a voluntary and conscious effort by the patient to tighten his grip on the wineglass in an effort to reduce the tremor in that hand. The patients knew what it felt like, the physician knew what it looked like.

Most patients respond to that particular story by assuming that the physician was at fault, that he should have asked the patient about what he was observing. But let’s be absolutely clear. The blame for this misinterpretation falls on both parties. Certainly the physician should have asked about the symptom he was observing. But the patient should also perhaps have volunteered an explanation of the action. Or perhaps asked the physician what he was writing down.

This is perhaps a trivial example but it’s indicative of a wider malaise – assumption. Physicians assuming something is one thing without checking for others. Or, because patients are equally culpable, assuming that the physician will ask all the right questions without the patient needing to volunteer information.

At the World Parkinson Congress in Montréal, six years ago I overheard two clinicians speaking to each other.

“There are a lot of patients of this conference”.

“Yes, but I think it’s still worth attending”.

This is the communication gap we have to bridge. And this will only be done in an atmosphere of equality. Patients – it’s time to talk more to the doctors. Doctors, it’s time to shed those white coats and ask more questions.

The old patrician model of medicine is a dinosaur. And we all know what happened to them.

Talking and listening in medicine