Today we officially launch our mental health platform. Of course, people have been sharing stories about mental health services for a long time following our pilot in the 5 Boroughs Partnership back in 2007.

We're hoping lots of people hear about what we're doing and share their story. Jason, who's just joined the Patient Opinion team, is an ex service user and volunteer at primary care addiction services in Sheffield and has an inspiring story to tell about how the independence and honesty of Patient Opinion was crucial in bringing about change in addiction services. Even we're impressed listening to him! We captured him on video and the Society Guardian went one better and put his face on page 3 yesterday. E-health insider ran a story this morning and we know many regional and local papers and radio stations are picking up on the launch today. Phil Hope, Care Services Minister offered his support saying "This partnership means every single Trust in the country can see what they are doing well and what needs to be improved, helping to drive up quality."

Through the course of this year, we've been travelling the length and breadth of England talking to staff and users about what this will mean, how we're doing everything we can to keep the system safe (on both sides) and how the system will lead to real service improvement. It was important to us that we equipped staff with the understanding and skill to communicate directly and honestly with service users, their families and carers through the website . Much more importantly, we wanted to be sure that they knew how to take the comments, suggestions and concerns they would hear and do something meaningful with them. After all, that's what we're all about - making people's experiences count. According to Maria, Head of Service at the 5 Boroughs Partnership during our pilot, the stories she received through Patient Opinion 'made issues real' and gave her the opportunity to 'facilitate some real reflection among staff'. And we have lots of examples, across mental health and acute care, where trusts have demonstrated through their responses on the site that they're truly listening and taking value from peoples stories.

From past experience we know just how honest, passionate and thoughtful people can be on Patient Opinion. We also know that sharing their stories on the site can lead to real improvements in services. What we don't know is what you think of your local mental health services so please share your story and make a difference.

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.      

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?       

Hits and clicks are the steroids of the web. Got ‘em and you’ve got growth, revenue and eyeballs. Without ‘em your dead in the water – or at least that’s the conventional wisdom. But whose interest do clicks and hits really serve? Well sometimes it’s useful to know that lots of other people liked an item – it’s a great way to get a sense of a field that you know nothing about. But thereafter hits and clicks mostly serve advertisers and shareholders. They are important because they reflect the ability of the site to raise revenue. But what if your site isn’t interested in selling things? What if you’re site is about changing the world?

Of course if your site is about campaigning or growing a political movement, then getting the message out is important and size still matters. But there is a new game in town, sites that are about generating hyper-local change. Patient Opinion for example is about making ward 15 in Solihull General less noisy at night, or about working with staff at Rotherham to improve how relatives are cared for. Here the motivation comes from the citizen - people are often strongly motivated to stop others going through some particular aspect of  care that has been poorly delivered at some specific site in the NHS.

No point in thinking that this posting will or should garner thousands of hits. What is much more important than size is that just the right 3 or 5 or 15 people who can do something practical about the problem see it and act on it. If we could find a currency and a business model that drove such micro changes, then we would be looking at a way to release the energies of citizens to improve the world in hundreds or thousands of small but significant ways. We might also be looking at the next YouTube. 

Four economic aspects of the web make such a system possible: cheap voice enables everyone to have a public say; RSS feeds increase the signal to noise ratio and enable your message to get to just the right people; the web makes it easy to find ‘people like me’ cheaply and quickly – people who are driven by the same passion or problems as your self; and finally the web makes it easy for people to coordinate action from email to PledgeBank to MeetUp new tools are helping people get organised.  All these tools are currently citizen-centric not organisation centric. For the first time in history it’s easier and cheaper for citizens to put together an effective response than it is for organisations. The problem is that such citizen campaigns can undermine collective solidarity. Such effects can be seen with both Al Quada and the ability of particular patient groups to (understandably) pursue their own with the effect of reducing benefits to others.

So what we need are tools and a web currency that rewards citizens for their efforts and passion about some hyper-local aspect of a service whilst incentivising busy staff so that they no longer see patient comments as blemishes but as the starting point for getting professional and organisational rewards.

Hyper-local tools are what Patient Opinion is now working on. How can we exploit the new economics of the web to enable citizens and front line staff to change thousands of micro-aspects of care?

All health care systems are bedeviled by the problem that sick ill people make poor shoppers. Patients are consistently disadvantaged by having less knowledge, less power and more vulnerability than other players in the health care system. In economic terms this is an example of an actor-agent problem: doctors and 3^rd party payers have to act as agents for the principal actor (the patient) but inevitably and always the interests of patient, professional and insurer/government diverge. This is why markets are such a poor way to deliver health care. As Robert Evans a great Canadian economist said: ‘The search for the informed, rational consumer of health care is of the same order as the search for powdered unicorn horn’.

The system is stuck because the costs of reversing the fundamental asymmetries of information, power and vulnerability have been too high to change. The direct result on patients is that their views are consistently under-valued and, combined with the dependence inherent in illness, they are systematically (if unintentionally) disempowered.

The direct result on healthcare as a system is that these agent-actor problem gives rise to multiple conflicting accountabilities - to patient, tax payer, professional values, local budget, local partners, the scientific evidence-base, local and national political processes, staff, and somewhere out along the tail, the patient. These accountabilities have multiplied in recent years and the NHS now frequently appears as a Gulliver - magnificent, well-meaning, and gigantic but completely constrained by a thousand Lilliputian ropes.

The web has changed some of the fundamental reasons for these asymmetries. This is most clearly seen with information where the free-for-all released by Web 1.0 greatly reduced informational asymmetries. For the first time patients could access the knowledge base of professionals. As esoteric knowledge disappeared out of one door, patients clutching web printouts entered by the other. Some information gradient remains but professional knowledge is no longer seen as either esoteric or zero-sum and everyone now recognises that the more patients know the better.

Web 2.0 creates other opportunities. Blogs, YouTube, and MySpace have dropped the cost of having a public voice to zero. Alone, this simply creates an over supply of voice which in turn leads to people shouting and becoming less civil in order to increase the chance of being heard. Thus to date, democratized voice has under-performed as a driver of quality in service industries.

But the web has also created RSS feeds that enable your comment about an aspect of service to be directed to ‘just the right manager’. This dramatically increases the signal to noise ratio for busy managers. Cheap voice plus highly selective listening should substantially lower the costs of responding to citizen comments.

Patient Opinion is about building system-wide information streams around these new, and as yet un-noticed, cost opportunities. The generic aim of these streams is to reduce the asymmetries to which patients are subject.

The final piece of the jigsaw is to create a web currency that rewards public and staff for using feedback to change the service. Instead of clicks and hits such a currency would place a value on responsiveness and improvements made.

Public voice gives explicit power to patients. And becoming a real co-creator of change in the system empowers people in their struggle with illness. This is especially true when the change that patients suggest is directed to the benefit of others rather than to bettering their owwn immediate care.

None of this will make markets more suited to health care but it should mean that where ever patients are struggling with the helplessness, lack of control and fear associated with illness, they can find tools that help them to feel more informed, included and valued.