I don’t know about you but I’m nervously awaiting the results of my ‘family and friends test’ from Christmas and the New Year. I was feeling ok about it. Then a friend of mine suggested a good result may not be a ‘good result’ at all: it might actually be a perverse and calculated attempt by my nearest and dearest to foist me onto others.
That’s the problem these days, you just don’t know who your friends are. In fact, some of you may be emerging from the festivities like Homeland’s Brody emerging into the sunlight after eight years of captivity, more confused than ever about who is a true friend or, even worse, who your real family is. That’s probably a bit too much to take in at this time of day isn’t it? Moving swiftly on….
Best not to read too much into the new NHS ‘family and friends test’ is the best advice I can give. In fact you could argue that the twittering classes (me included) have rather inadvertently and counter-productively given it a status that was never intended. Seen as one of a number of mechanisms to record patient opinion it has some merit. God forbid that it becomes more than this or is ever used in isolation as a deal-maker or breaker. But then perhaps that’s the point. It’s not the ‘family and friends test’ in itself that matters but how it is used.
What should worry us is a more general trend: the apparent ascendancy of patient ‘opinion’ – people’s point of view – over ‘experience’ – knowledge and understanding gained through their care and treatment – as the basis for developing a patient-centred health service. J. B. Priestley said that ‘Public opinion polls are rather like children in a garden, digging things up all the time to see how they’re growing’ and it is a warning worth bearing in mind with regard to the development of our health service.
Don’t get me wrong, I am not knocking the value of things like real-time feedback but it is about getting the balance right. Indeed, I very much admire the work of various providers to capture patient stories, connect these with the staff and/or organisations concerned and help make change happen.
But I recently signed-up to one such provider’s Twitter feed and I now get about 10 tweets a day, the majority of which are individual quotes – both good and bad – from patients. Nothing wrong in that, you might say. Except that, after a while, without context, the daily bombardment can begin to take on the same qualities as ‘chaff’ dropped by bombers during the second world war to swamp and confuse enemy radar. The target or rather our purpose can become less rather than more clear because of it. Handled without care, is there not a danger that the audience for whom it is intended (which, incidentally is not clear) may begin to show signs of compassion fatigue, focus only upon the low hanging fruit to change such as the colour of the walls (not that this isn’t important) just to get us off their backs or, worse still, switch off completely.
Thank goodness therefore for some reminders that this patient experience malarkey is a serious business with a vital role in delivering better outcomes for patients. Here’s an article from BMJ Open that came my way yesterday and is worth reading – it is a systematic review of the evidence on the links between patient experience and patient safety and clinical effectiveness. And if you have a rare disease, or care for someone who has, you might wish to take part in this survey being run by Rare Disorders UK, the results of which will be published in an ‘Impact’ report later this year.
And finally, if today as a patient leader you are asked your opinion I can do no better than point you in the direction of David Gilbert’s (InHealth Associates) excellent briefing paper ‘The Patients’ Dozen.’
With friends like these it becomes easier to sort the wheat from the chaff.
2 thoughts on “Reminders that this patient experience malarkey is a serious business”
Excellent Blog Simon, real food for thought. A huge issue for me is the wider represented voice and the best ways to achieve this collective view. thanks too for highlighting ‘the patients dozen’. rreally enjoyed reading this and subsequent reflections.
I have some issues with the expectation that patients should be at the table to represent others. This expectation is not placed on our academic or other colleagues so why is it placed on us. We are there because of the validity of our insight, knowledge and experience to ensuring high quality science is funded that meets patient needs.
Thanks for your comment Sharon.