Conversations are the life blood of Patient Opinion – carrying your story to the heart of the NHS is, after all what we are all about. But why just the NHS?  Conversations are the stuff of politics and democracy too – why not share patient stories with MPs, local authorities and scrutiny committees?

From 7 July 2010 Patient Opinion will begin to do just that. We will be offering a free email alerting service to all Westminster MPs, so they can be automatically alerted to what their constituents are saying about local health services and post a response if they want. The new service is being launched next week at Portcullis House in London.

We hope that this will have many benefits. Patients stories and experiences will have greater reach and power. MPs will be able to monitor what local people think of their health services and, if they want, show that they are listening by posting comments.

Patient Opinion is already showing how stories are helping improve health care - and soon we will be able to show which local and national stakeholders are actively listening to any particular story too. Is your LINk listening? Is the provider using Patient Opinion? Is your MP in the loop?

All this is an exciting new development in online civic engagement – a way to use the power of voice to promote discussion and help bring a truly patient-centred health service into being.

The Big Society is often seen as being about two things: freeing data, so that it can be mashed up and better used. And freeing the energy of citizens, via social enterprises, to solve problems in new ways.

We think it is also about creating structured, helpful, local conversations that create more engagement and many more service improvements at much lower cost than has ever been possible before.

The Big Society is easy to lampoon but I wonder….

When Thatcher was elected in 1979 privatisation did not figure for several years but gradually became a core policy. This happened partly because it raised handy billions but also because it acted as a clear policy principle: wherever possible people not the state should end up owning stuff.

Clearly there are echoes here for the Big Society. In times of recession the Big Society may – perhaps - be a way to reduce the bills by outsourcing services onto citizens. Dubious but possible.
More important though the idea of the Big Society may turn out to be the same kind of divining rod for this government as privatisation did for Thatcher. Faced with a policy dilemma both wings of the coalition may find it useful to ask ‘will this policy increase the power of the state or decrease it?’

It might seem counterintuitive for the politicians to give power away – but then it was counter-intuitive to many when Thatcher gave away the family silver in her privatisation fire sales.

But perhaps this credits politicians with more power and insight than they deserve. I think the real importance of the Big Society is not because it tells where Cameron will take us, but what he is following. He senses incoherently that the relationship between citizen and government has already changed and the Big Society is his way of trying to ride the change. He hopes that this will lead to a renewal of civic virtue – that people will flock to start schools, car pooling and recycling. Well that might or might not happen but what sure IS happening, and what is driving the change that Cameron transmutes into the Big Society, is people’s willingness to share their stories via social media. Without knowing it perhaps Patient Opinion is already part of the Big Society!

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?