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!

We've previously blogged about the idea of "sousveillance" - the idea citizens can keep an eye on those with greater power in society, using what are now everyday tools such as video cameras, mobile phones, blogs, and, well, sites like Patient Opinion.

But it's always been a little bit theoretical. Not such a big deal.

But now, here comes an example of sousveillance where it really matters - and all done with texting.

Let's hope it works.

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.

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’.

The call went out last Friday – and  lo! The site was up and running 28 hours later thanks to some great work by the direct.gov team. Eat your heart out Connecting for Health.

In among all the hubbub about Ofcom, public service broadcasting and the future of Channel 4, who would have thought that Patient Opinion would get a mention? What a surprise!

And it's true - already we've had some very valuable help from the folks at 4ip, so far focused on getting the basics of the site right - search engine optimisation (Googliness, you might say) and usability. We're learning lots of good stuff which will soon turn itself into a better site.

But being mentioned in the context of public service broadcasting made me ponder. Patient Opinion is a digital publisher, and doesn't aspire to broadcasting. While we like to think we provide a public service, we also provide a service about a public service - the NHS. And, am I'm sure Paul must have said before somewhere in this blog, although we are looking for an audience, we're not looking for one in quite the same way as BBC online or CNN or anyone else.

For each posting on Patient Opinion, we're looking for a narrow, well-defined audience: those particular people - maybe the NHS manager, clincian or patient activist - who can take a story about their local health service and do something practical and positive with it. This isn't public service broadcasting, it's public service improvement. And we love it.