We don’t do duvets: patient choice and clinical trials

Younger readers will remember a regular skit from the BBC’s Saturday morning children’s tv show some years ago in which the week’s special guest would enter Trevor and Simon’s laundrette and ask if they do duvets. ‘We don’t do duvets’ Trevor and Simon would reply along with the studio audience.

You could say that a patient’s experience of the NHS when it comes to taking part in clinical trials is like that. That’s always assuming they get the chance to ask the question: ‘do you do research?’ of course. And many do not. They are not even prompted by a helpful ‘we do duvets’ type window sticker of the sort you’ll find in your local laundrette. As it so happens my laundrette spells out all the different duvets they do by size, type and price.

Take this summer’s National Cancer Patient Experience survey. The results showed that only 1 in 3 people with cancer have had a discussion with their doctor about the chance to take part in a trial. Many, many of those who did not, would like to have had. The situation is probably far worse in other conditions. What little data we have supports the stories patients tell me about the barriers they have faced: ‘I had to find my own way’ is the most common refrain.

(Of course it should be pointed out that we don’t really know from the survey whether it was a discussion in the true sense of the word or the sort of discussion I have with my doctor where I get half-way through my opening sentence and he prints a prescription. Or I say something like: ‘I think I have ‘x” and he says ‘no you don’t.’ End of story)

Anyway, I digress. The bottom line is that the survey shows the NHS is poor at communicating with patients about research and a long way from enabling their participation through providing patient choice.

It’s as though the NHS is stuck on a very long spin cycle impervious to all known tricks at stopping the machine including a proverbial kick. In fact you could say the same about patient choice generally : it seems to have been put on a ‘heavily-soiled wash’ programme by some health professionals even though it only needed a good rinse – everything has become a whole lot more tangled than it ever needed to be as a result.

But things are improving and we are entering a period where the opportunity to accelerate this change is greater than it has ever been. We must grab it before things default to the ‘old world’ NHS view of research.

For a long time we have needed to re-boot the system so to speak, and provide patients with the sort of access to research which takes account of their growing interest. Well, that re-booting has now happened with the Health and Social Care Act and its duties on NHS organisations to promote research. Whatever you may think about the legislation as a whole, this is the unequivocally good bit of it.

There has also been a need for re-programming the system so that it becomes more responsive to patient choice. The Draft Mandate and NHS Choice Framework on clinical research published just before the summer is the beginning of this re-programming. (By the way the books are still open on the Department of Health public consultation on this. So if you have time you should respond to it now or, if you can bear it, drop me a comment instead). What remains with this reprogramming is the somewhat harder task of downloading the new software in every Trust, CCG, Healthwatch etc etc. Just think about the average software upgrade in your office and the most computer illiterate person in it (usually me) and you are about 1/1000th of the way to understanding the difficulty of the task.

That will also be followed in the autumn with the review of the NHS Constitution including what it says about patients and access to research. Once this has washed through the system, a way to think of it is as the computer desktop shortcut to benefiting from the new software mentioned above. But we have much to do to grow awareness of it – only 7% of people currently know about their existing rights under the Constitution according to an NIHR CRN CC survey last May [see blog about International Clinical Trials Day].

So the next bit is making sure that patients are empowered appropriately to make the right choices (and I include the choice not to take part). I think choice architecture is the policy parlance for this. And, for all its faults, the sort of framework laid out in ‘Nudge’ by Thaler and Sunstein (Penguin 2009) which i have been reading recently is as reasonable a starting point as any.

I know ‘Nudge’ came in for a lot of flak when it was published over here but you might like to have a read and have a go at thinking about what it might mean in the context of clinical trials.

I certainly did. From the incentives for people to make such choices (the potential opportunity to benefit from new treatments as well as an altruistic desire to ‘make a difference’) thru giving people the evidence (all the evidence) and relevant tools to make sense of this evidence, and ensuring a good default choice for those who are disenfranchised for one reason or another, to making the system responsive to feedback.

As I say it’s one way of looking at the challenge. You may agree or disagree with it as an approach. You might even think, as i do, that it doesn’t go far enough towards empowerment. But it provides a starting point and a way of looking with patients at their pathway in research so that it works better than it does now. I am sure there are others. I am sure there are better ones. The important thing is that any framework is focused on delivery in terms of patient outcomes.

And what of the outcome of choice in research for the patient? That’s a blog or several blogs in their own right. Right?! Derek Stewart writes crisply and lucidly on his blog about the patient experience and always with an eye on outcomes. I can not better that, so check it out on my blog roll if you have time.

Personally I would summarise what ‘choice’ means for patients in the context of research by recounting a story told to me by a colleague – a researcher. He told me about a patient he works with closely who, when asked by someone whether she was disappointed that the trial she had been involved in had not succeeded said something along the lines of: ‘no, because it means we can tick another thing off the list.’ Simply put, patient choice in research might be expressed as giving people the opportunity to tick things off the list whether for themselves or for others.

There’s undoubted and understandable scepticism about whether all the elements described above will fit together in the name of patient choice in research (I have barely touched on professional attitudes as a barrier for instance). Indeed you may contest much of the basis of my argument above. But, ever the optimist, I believe they can.

Everyone has the right to a duvet day in my laundrette.

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