One of the great things about building a platform like Patient Opinion is that people are always finding wonderful new of ways to use it that we have never thought of. Like the young couple using an addiction service who had a baby just 5 weeks old. They had had a few slip ups and used a bit of this and that other than their prescribed methadone. Terrified of having positive urines and loosing their beautiful new baby they could not ask their drug workers because then the cat might have been out of the bag. But at the same time they desperately wanted help.

The answer turned out to be sharing their story on Patient Opinion. They could see that the clinic was run by  PCAS who had a great record of responding to other requests on Patient Opinion, so they posted their story anonymously but publicly. That way they could get find out whether coming clean would end up with them loosing their baby. What is more everyone else can see the response too – which may be reassuring to other mums-to-be with an addiction problem. And one more vulnerable couple and baby helped to keep going, to not give up. 

Generic responses won’t do in these circumstances. Patients and service users need to know how this clinic, this medical director would handle the situation, not what NICE or the PCT recommends. And they will use the quality of the response to decide whether it’s to be trusted or yet more corporate speak.  Of course it’s not just substance misusers. If I had to have a coronary bypass graft, I’d want to know what the surgeon's mortality rate was and how many of these operations she did per year. But being British I’d be probably be too embarrassed to ask. But I would be happy to punt the question on Patient Opinion anonymously. And may be get an answer that helps everyone using that service.  

May be confidential conversations that can only be asked in public will turn out to be really common. And important.

We’ve long wondered whether we should allow ‘sideways’ comments on Patient Opinion. That would mean that if you saw a posting about orthopaedics in Southampton that matched your own experience in Aberdeen you’d be able add your comment to the Southampton story.  This is a classic social media approach - users comment on each other’s pages and create content in a self-generating way. It would certainly have given us many more postings and much more content so why don’t we do this?  

Up to now we have had two reasons. The first is because we built Patient Opinion to in order to help patients staff and service users to improve health services. So we wanted to keep each thread of conversation focused on what was wrong (or right) in Southampton. Allowing comments about Aberdeen might help deliver this if by linking similar problems we increased the likelihood of services in both places improving. But this seems unlikely to be the case. Even where patients  are talking about the same class of problem the answer is usually very context specific – in other words Southampton have to work out the right solution for them because, even for apparently identical problems, local answers and implementation will differ. Secondly we felt that lots of comments of ‘the same thing happened to me in my hospital’ type could turn Patient Opinion into a place to moan rather than one focused on local change. 

In the last few days three things have convinced us that we are right not to be seduced by the received social media wisdom and to stick to our current approach where single issue conversations highlight  and (hopefully) resolve particular concrete problems in specific services.First I was talking with Hugh Flouch of the excellent Networked Neighbourhood site who pointed out two things. Firstly if you allow members of the public to comment on other people's postings then things can get pretty fierce and this puts people off telling the stories they really want to tell.  After all it’s hard enough posting the story of your colonoscopy without having other members of the public comment, criticise or flame about it.Secondly have a single strand of conversation makes it much easier for the hospital to hear what’s being said. On community sites the very diversity of opinion can make it hard to tell what people want to be done differently. Finally I heard an interesting story from a mental health trust CE who said that they had had to ask the local paper to remove a story from the paper’s website. The on-line discussion itself was very positive about the trust but the fairly vigorous  hurly burly in which it was being waged on-line was clearly stressful to the people involved – many of whom had only recently left the care of the trust.   

So we’ll be sticking to single issue strands of conversation on Patient Opinion. Seems like a certain purity of purpose may be both more effective at generating local improvements and healthier for patients and staff  alike.      

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.

How far can you push the Patient Opinion model? We've been thinking about this a lot as we get ready for our MyPublicServices Conference that we are putting on in November. We know that its surprisingly easy to extend it to other countries (providing you have great local people to work with!) and our Catalan, Spanish and Italian versions should go live soon. But what about extending sideways to other sectors within the UK? What about Social Work Opinion? Or Education Opinion? Well, quite a few people are trying to do this and we wish them well as we have no ambition to extend beyond health and social care. But we do have some thoughts about this extension?

First off does it make any sense to have a single system of feedback? Apart from convenience of accessing and promoting a single site (which can be handled in much better ways than creating a single portal) does the citizen gain anything else? Well, yes, if it means they can tell complex stories involving multiple providers, issues and places in a way that makes sense to them. But to do this well the system needs be able to handle each bit of the journey in an appropriate way. Commenting about your social worker for example probably raises issues particular to this field that need to be handled sensitively.

Which begs the question what is the nature of ‘appropriate’? Is there anything we learnt from Patient Opinion about what ‘appropriate’ means for web-based platforms?

Roughly speaking public services can be divided into those that are transactional and those that are based on some kind of personal relationship. The touchstone here is whether you, as a user, have a relationship with at least one or two of the key people providing the service. FixMyStreet and its generic descendents FixMyRailways, FixMyRoadworks and FixMyFlyTipper are all clearly transactional. Social Work Opinion, Pupil Opinion and Probation Opinion would, like Patient Opinion, be at the relational end. Our guess is that it’s much easier to build a generic service for transactional services than for those based on relationships.

This is only in part because the ethical, legal and business knowledge needed to generate income from relational feedback is highly specialized. It’s because users want a relationship. They want to feel heard by their doctor, they want a response from their teacher, their probation officer. They want to touch, feel, affect the relationship they already have. That’s why they are posting their story in the first place.  Just providing a place that does to the professionals they have been dealing with my cathartic to the angry and the frustrated. But it does a violence to the majority of people who come on sites like Patient Opinion and I Want Great Care.

Complicating all this further is the rhetoric of the web. Built around consumer sites both the rhetoric and the formal research about web users tends to concentrate on desire driven events. Health care, social work and the criminal justice tend to be fear and anxiety driven. Just think about the difference between sharing the story of your wedding on FaceBook or the story of your haemarhoidectomy on Patient Opinion. Get the picture? So the standard script about web sites – that use matters, that hits and clicks are the only currency – just doesn’t work on for many public services. Not only does this mean that the standard advertising driven models don’t hold up (what services would you advertise on Social Work Opinion?). It also means learning what drives users to use the site has to be discovered. It doesn’t just fall fully formed off FaceBook or out of the Twitter tree.

So where the beef here? Maybe that a generic model is practical for transactional services but that for relational services it’s better to build a flotilla of sister organisations who each specialize in a sector, manage it’s particularly risks, and who know and love it enough to generate income. With the whole lot held together by a loosely evolving software systems that have enough inter-operability to provide seamless storytelling to users. Which is more or less the direction we’re interested in taking Patient Opinion. So if there are any budding fellow travelers out there who want to colonise a new sector, come and talk to us!

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!

Now that postings about mental health services are beginning to roll into Patient Opinion we’re starting to get into some really interesting issues. For example how to disentangle ‘paranoid ideation’ (as the psychiatrists would call it) from distressing events that really happened? Feelings of vulnerability and wondering if people are getting at us occur to everyone from time to time and for those who are acutely mentally ill these can become extreme. But some times some pretty awful things really do  happen in psychiatric wards or in the community and telling the difference between these two is never easy.  Sometimes people can be both psychiatrically very distressed and be experiencing very poor care which they have every right to complain about.  

Of course all providers of mental health struggle with similar issues when dealing with some complaints.  What is different for Patient Opinion is that published stories can be seen by anyone.  Since all we have to go on usually is the story itself we try and balance three different audiences:        

•  the needs and vulnerabilities of the service user who has posted
•   the needs of the staff and organisation
• the needs of future users of the service. They may benefit from frank disclosure of poor practice. Or be unnecessarily put off by feedback about a service that is based on delusions rather than on reality.

And keep the following principles in mind:

•  the ability of everyone, not matter how ill, to say useful things about their care
•  the need to highlight poor practice in ways that make improvement more, rather than less likely.
• our need to protect people who post stories whilst in a vulnerable state.   

In practice this means that such postings are first discussed by our editorial team which includes a GP and a mental health social worker. These are some of the most interesting and lively discussion we have as we try and balance all these rights and principles.  Quite often we edit postings (in line with our editorial policy),   aiming to focus the story on what actually happened and remove assertions about motive or beliefs about why the events happened.

Sometimes we email the service user back and say that we will publish the story but only after waiting 2 weeks and then checking back with them that they really do want their story published. This is a very productive route as often they change what they want to say over this period.

Finally we are thinking about whether for some of these stories are better suited to being shared with the Trust and the Care Quality Commission rather than publicly as these two organisations are better placed than we are to make these difficult judgement calls. Sharing them in this way could enable users’ voices to be heard whilst protecting them at vulnerable times.

But we know that we have not got all the answers. Any thoughts about how we could handle these situations better?       

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’.