Knowing the total number of people or events in anything you are trying to measure has always been important. That way you can easily work out rates, percentages, trends and all those other useful things.  So why would you ever want to do away with denominators?

But there are downsides to denominators because they focus on the overall and not the particular. It’s great to be able to have a statistical measure of quality (and this clearly depends on valid denominators as well as many other things) when we need to generalise. But what happens if it turns out that the real gold dust for quality and service improvement lies in the particular not the general? Under these circumstances denominators and all their statistical brethren may turn out to be much less relevant than we thought.

Patient stories always arise disproportionately from those who are more than averagely happy or unhappy leaving a silent majority of ho-hum experiences in the middle. So although Patient Opinion appreciates the very real value that denominators and all their ilk bring, we have also been aware of a particular kind of tyrannical thinking that says stores have to be reduced to some average numerical measure to find out what they ‘really’ mean.

So I was really interested to hear from a colleague that the highly respected Institute of Health Improvement (IHI) in the States has talked about the importance of sometimes being able to dump denominators and value stories for some of the great things that they can bring:

·         Getting at the particular rather than the general – and the particular is what really great health care is always about

·         Pointing you in the direction of solutions – a trend won’t tell you why it’s going up or down, whereas a story usually indicates what went wrong and often what you need to do to make things better

·         And stories are great at motivating staff. Much better than pie charts no matter how appetising. Stories take you right back into the reality of care and generate discussions about what might have happened and how it could be made better. And that’s the real Holy Grail – getting people to change the particulars of what they do.

Of course it’s not an either or, we still need those stats. But if you find yourself discounting ‘anecdotes’ and asking what patient stories ‘really mean’, it may be time to dump the denominator for a while and listen to what people are saying. After all no one wants to be ‘just a statistic’, everyone wants to be heard. The story, the particular, the anecdote is often the place to start if you want to make humdrum care into great care.

Last week the King’s Fund ran an interesting day on improving the experience of patients in hospital, as part of its Point of Care programme. Lots of good people with plenty of expertise and good ideas.

But one thing struck me quite hard: whenever people start talking about “listening to the patient experience”, the question of measurement comes up – and sometimes takes over. Often, there seems to be an implicit assumption that just by measuring something, we’ll create change. So let’s measure the patient experience!

I’ve got nothing against measuring things (when I had a career, it was as a quantitative health services researcher). But we’ve got to gain some clarity over what measuring is for.

Measuring is fundamentally about the past. How are things now? How were they last week? Did we improve? But nothing about measuring changes the future in any radical way. If anything, measuring reinforces a future which is similar to the past, only “a bit better”.

More than that, I’d argue that measuring is an act of power, and being measured is an act of powerlessness. By measuring “the patient experience” we reinforce, rather than question, the patient’s status as object, rather than subject. Nobody with real power gets measured.

The rhetoric of understanding “the patient experience” is about listening – but the implementation is about measuring. At the event, I asked whether there was a conflict between listening and measuring. Now I think there is.

To me, listening is an act of compassion which recognises a common humanity and, I believe, holds the potential to create radically different futures. Measuring won’t change the world: it will only tell you whether the world changed.

Unless you think differently?

The Patient Opinion team has been out and about this week – James, Kate and Miriam in Manchester with our Northwest subscribers and Paul, Tim and Amy in Maidstone and London training mental health trusts to use our new mental health services. It was great for us to meet all the people who came to these events but the high points were two barn storming presentations by people from outside the PO team.

In Manchester we had Maria talking about her experiences using Patient Opinion as head of services at 5 Boroughs Partnership Trust. Maria’s enthusiasm for the way that PO helped her track what is happening on the front line across all her busy areas of responsibility, and to use this feedback to help staff actually make the changes that service users were talking about, clearly impressed the other managers at the meeting.

Meanwhile down south Jason told the story of how as a volunteer at Sheffield’s Primary Care Addiction Services he had been helping service users get the changes they wanted. The first big issue coming up on user’s stories was frustration at not knowing how long they had to wait for their appointment – if they went out for a smoke would they miss their appointment? Why were people going in before them? Just giving out more information in reception quickly cooled the tempers that had often been fraying.  As Jason said: ‘I never lack from a cup of tea from the receptionists now!’

Once this was out of the way and users began to trust the independence of the PO service and the willingness of PCAS to listen, more interesting uses quickly emerged. Having found a way of asking questions anonymously and getting sensible answers back, service users have begun to ask the clinical questions that they have been afraid to ask. ‘We’re still users and have a young baby. How can we get help without any fear that social services will come and take our baby away?’

So what have we learnt? That you need three things to really begin to make PO fly:

·         a steady stream of postings,

·         willing and enthusiastic managers,

·         And involving lost of staff over among enough time for them to really begin to experience the power of users’ stories to help them deliver better services.

It’s also clear that using volunteers like Jason is great way to do this, especially for groups like substance misusers who are skeptical and suspicious of services. 

And if you do this, then your staff and your users will not only tell you useful things, they’ll probably start using the service in ways that you (and us at PO) never even expected.

Oh, and one last thing. If we want to really convince busy people from the service of the benefits of Patient Opinion then we’d better use as many service users and front line managers as we can to speak for us as they are so much better at convincing other managers and clinicians of the benefits of using Patient Opinion than we at PO Central will ever be! So thanks Jason and Maria!

Watch.UsNow is a great video about how the web lets people take things into their own hands and just get on organise stuff. There’s Clay Shirky, Charlie Leadbetter, William Heath, Lee Bryant plus mums from netmums and many others all talking very good sense. Well worth a quick watch (and thanks to Jonty  at Demos's Progressive Conservatism project for bringing it to attention).  

But looking at it I realised that Patient Opinion doesn’t quite fit. And the reason is that we don’t ‘do community’ in the same way that netmums or Facebook or Couch Surfers do it. For them the community is the whole point – they are about giving people a place where they can do what they want in ways that they are passionate about. This is what Web 2.0 has been all about up to now and it’s releasing a wave of mutual help and support that will, for sure, change the world in just the ways that the Watch.UsNow video explains. 

You can easily imagine similar communities building around Patient Opinion with people discussing services for endometriosis or hospitals  in Wolverhampton. And of course we’ve talked long and hard about whether Patient Opinion should do this. Our worry is that such groups would quickly turn into moaning arenas or gravitate to the ‘let’s go beat them up’ approach. But perhaps we’re doing everyone a disservice by such assumptions and we should trust people more and go test it out. 

But there is also another reason why we don’t quite fit into the standard web 2.0 model and that’s because we’re focused on changing services whereas most of the standard bearers for  ‘web 2.0 is a revolution’ are focused (rightly) on their members interests. So netmums is about mums not primarily about services for mums. And Couch Surfers is about finding congenial  people to stay with for free in new cities, not about improving travel services.  

Patient Opinion together with sites like MySociety are doing something different – we’re trying to engage the service, to get busy staff to act in new ways. This is very different from setting up a community of users ‘outside’ the system and who are all too easily perceived by staff as being critical. So it is possible that vibrant communities of users might indeed make our  core task – improving services – harder not easier. 

This isn’t an either/or of course – sites that focus on mutual support or benefit and sites that want to change the system are both really worthwhile. But Patient Opinion’s task of changing the system by engaging many thousands of staff as well as  tens of thousands of users, is distinct for two key reasons. Firstly it creates a different sort of public value to groups focused on mutual support. Second if we are successful, it opens up different revenue streams beyond the old stalwart of advertising that everyone and his dog is trying to make a living from on the net. After all if we could help patients and carers initiate 10,000 service improvements a year this will create significant value for the NHS. If we could find ways to extract this value and feed it back into more patient-initiated change - now that would be exciting. Then there really would be money in them there pills!

Lots of organisations that we work with welcome Patient Opinion. But some see web-based feedback more as a trial than an opportunity.  Who needs web-based feedback when you've already got surveys, CQUINS, hand helds and your own internal system of PALS and complaints? The very things that appeal to patients and the public about Patient Opinion – that it is easy to use, free,  visible to everyone,  independent, impossible to control, and full of  anecdotes – are exactly the things that these trusts and managers fear.

Understandable but the problem with looking at the world (and Patient Opinion) in this way is that it assumes that because NHS organisations have been able to control feedback in the past they will still be able to do it in a world that is being re-shaped by forces much wider than the NHS, or government policy. We are used to running an NHS in which patients interact on our terms, use our complaint procedures, fill out our questionnaires – when now, out there on the web,  everyone  is already saying exactly what they think on their own terms.

Losing control of these internal procedures feels uncomfortable but actually represents a great opportunity. As a trust it means that something that was scarce and expensive – patient feedback – has suddenly become cheap and plentiful. Yes, that means news ways of working. Yes, it means that we have to respond in public rather than use complaints procedures that are bureaucratic, private and easier to control. But it also means it is now really easy  to involve every single team in the trust in hearing what patients are saying, reflecting on what it mean for good practice, and entering into a public conversations about what they are going to do to improve things.  And that has to be a change for the better.

Great to be part of the rebooting Britain release – even if I only managed to get there for the afternoon (due to having to do a surgery in the morning). And great that Patient Opinion got some good mentions from Jeremy Hunt, Lee Bryant and Charlie Leadbetter.

But was it a good day? Some people thought it didn’t reach far enough. But for me it was great to hear people like Lee holding forth on democracy. And Howard Rheingold who has been riding this territory out west for as long as anyone can remember and who signposted so much of it for so many of us.

I suppose at root the re-booting metaphor is a bit too easy to be a really useful key though. Turn off, wipe clean, switch on again is really not how humans or institutions work. A good hook to hang interesting stuff round but actually changing how the wetware works is much more interesting, absorbing and long-term than building the software and hardware.

And of course you can see Patient Opinion's contribution to the essays at The Independent.

According to the folks from Dr Foster the PPI industry – i.e. everyone in the NHS involved in PALS, complaints and 'engaging' the public - employs a cool 34,000 people in England and costs upwards of £600 million per year. Which makes you wonder. Especially as the government seems to ramp up the importance of engagement with one hand whilst disrupting it with multiple reorganisations with the other.

And  that word 'engagement' always strikes a strange note. Do they mean as in marriage? Or  gears? Or perhaps armies in battles?

In the last 2 weeks I’ve spent 3 different days discussing all this (which has been about 2 days 6 hours too much)  but the messages have been clear:  the discussion within the NHS has little new in it. It is all talk of systems, and processes and listening and diversity of strategies. Which is all good (if old) stuff.

But what is striking is how much the NHS exists in its own self referential box. Discussion of the world of voice outside the NHS (blogs, Youtube, Facebook etc) was conspicuous by its almost complete absence.  The fact that Twitter may be toppling the Iranian government sparks wonder at the power of these new fangled gizmos to do strange things to strange people in strange lands, but not the first hint of an idea that it won’t be long before the NHS gets subject to similar firestorms.

From a purely selfish point of view this is not all bad as it leaves Patient Opinion free to beaver away at getting ‘voice outside the NHS box’ working without anyone thinking that it is too important. From another perspective it’s fairly depressing – it's as though, at the time of Caxton and the invention of the printing press, everyone was busy saying ‘Books to engage the masses? Ah, no thanks, I’m a parchment person myself. Can’t beat a good quill and a tame scribe to get the message out, and the peasants just can't seem to get enough of those illuminated surveys we’re so good at’.

Nobody would deny that we've seen enormous improvements in healthcare in the last 25 years - and not just in medical and surgical interventions, but in the organisation of care. Look at those falling waiting times!

But once in a while (or maybe a bit more often than that) we get a posting on Patient Opinion that makes us blink and rub our eyes in astonishment. Like this one, which arrived last week:

Last week I had to wait for 2 hours to see my GP, 45 minutes of which I was standing in a queue. There was a heavily pregnant woman in front of me who was obviously finding standing for so long hard, so I had to tell her I'd queue for her and let her back in at the last minute.

Sorry? Did you say standing in a queue?

That can't be right. Maybe the relevant GP surgery could get in touch and tell us why we've misunderstood.

We started Patient Opinion because we thought that it would be great way to aggregate and direct the collective wisdom of patients and carers. Then we realised that it was better to think of Patient Opinion as a way to create thousands of transparent, structured conversations between patients and providers with us acting as a giant switch board getting stories and responses to just the right people.

But sitting in my GP’s chair, a final lesson emerges in all this: The power to tell and re-tell the story of illness is part of how we all make sense of the meaningless depredations of disease. Telling your story on the web offers, for those that want it, new ways to do this: Our son was just twelve days old when he died. Throughout this distressing time the staff on the Neonatal Unit were outstanding. They treated him with dignity throughout his short life..…  the staff made us feel that his life was as significant to them as it was to us. Nurse Jan made a print of his feet and hands and put them together in a card with some clippings of his hair. On Father’s Day there was some chocolate for me that was labelled from him. (Full posting) The telling of such stories, the ability to speak even whilst grieving, has therapeutic benefits.

Add the promise that by sharing what you have learnt you might be able to help improve a small part of the world for everyone and the sick are offered that most precious thing, the possibility of themselves being needed for their insights, of giving some thing back to the community of the well, just at the moment when they feel at their most powerless. That the new forms of web-based voice can go beyond the passivity of suffering, and begin to make sense of what had previously been meaningless is perhaps their greatest promise:  ‘Mum’s illness was awful but we helped change things for everyone!’

The act of helping others is consoling because it reconnects us at a time when we are at our most alone. For the first time improving services can  be driven by the intrinsic desire to find meaning within the experience of disease.  Multiplied by the hundred thousand as only the web can, these transparent, directed dialogues move us beyond exit and voice and offer new glimpses of redemption in a post-market world.

Sitting on a working party the talk was all of governance, protocols, making sure that ‘the lessons are learned’. Life was proceeding as it has in the NHS for several decades on the general assumption that if control is good, more control is better.

This might be called the One Last Heave model of service improvement: having implemented  the 137 recommendations made by Lord Laming following Victoria Climbie’s death, and being faced by the appalling case of Child P, the system homes in relentlessly on ‘further lessons that must be learnt’, another inquiry, yet more checks and controls. One Last Heave will get us to Nirvana where bad things can’t happen. 

Such is life in an environment where systems are tightly coupled. And sitting there not doing full justice to my working party, I realised that’s been the major characteristic of the last 20 years of my life as a clinician in the NHS. We’ve been busy using the power of newly digitised practice to build ever more tightly coupled systems. More and more is governed, linked, joined up, defined, evidence-based. Variation has been driven out, and following agreed practice is valued over the exercise of judgement and discretion. 

The dream behind building tightly coupled systems is that they will lead to control, equity and cost-effectiveness. Which may be so in the short run but in the longer term tight coupling leads to rigidity, risk aversion and declining innovation. Tightly coupled systems deliver decreasing returns – every additional goal, policy, organisation, partner or issue leads to less return.  There are two reasons for this. Firstly because variation is seen as the enemy: noise, randomness, error and failure are all things to be engineered out where as in fact they are often needed to make the system work. And are an important source of insight and innovation. Second the coordination costs of tightly coupled systems rise non-linearly as the number of things to be coupled increases.  So ‘joined up government’ quickly becomes toxic.   

And now we are faced with an economic situation that gets ever more uncertain. It is unlikely that the ‘one more heave’ philosophy of tightly coupled systems will work in a severe recession. Being risk averse, relying on protocols, KPI’s and micro-management will fail in the newly austere state because such approaches deliberately exclude the variation from which the new solutions will emerge.

The answer to all this? Look for systems that have increasing returns. Google, Wikipedia, e-Bay, the web itself – all deliver increasing returns. The more people use, edit and review Wikipedia the better it becomes. Such systems are almost always loosely coupled. No body is forced to use Google, no one accredits e-Bay buyers, and there was no government roll out plan to teach teenagers to use SMS text messaging. Is it possible to build increasing return systems that help improve health? Don’t know yet, but if it is I know they will look more like the net than NICE, more like Wikipedia than Whitehall.