Care homes seminar programme_final v4.DOCX (19.22 kb)

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!