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.

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.      

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.

Next week I'm off to talk to commissioners of maternity services about online feedback from users of the services they commission.

Maternity care is one of those parts of health care where "clinical outcomes" are vital but usually OK, and "experiential outcomes" sometimes forgotten. I've blogged before on what women have said on Patient Opinion about their care.

So I thought it might be interesting to construct a quick Wordle of the 1,000 odd comments on maternity care that we can find on both Patient Opinion and NHS Choices. And here it is.

In my last post, I rashly challenged someone to show me online comments about care homes. I called and the internet answered, in the form the lovely Best Care Home,who show the best of care homes, by encouraging positive reviews about CQC 3star rated care homes. As Debbie says“it is about time we heard some positive news about [care homes]”.

This got me thinking… What is the advantageof having critical feedback about care homes? Or, rather, what is feedback for?At Patient Opinion we feel that our aim in healthcare is to facilitate changethrough getting just the right patient story to just the right person in theNHS. This change would not be possible if it wasn’t for the stories having acritical element. Increasingly, this is how public services are changing,through service users donating their experience, to make a difference foreveryone else. The patient is a becoming a co-creator of the service.

So, is there a difference for privatesector organisations like care homes? Both care homes and NHS hospitals areoften demonised by the media, both are plagued by funding issues, and choice isan issue for both. So… the difference? The care home sector is in constantbalance between care and money. The majority of care homes are privatecompanies, with reputations to manage. An understandable fear is that criticalpublic feedback will impact on negatively on their reputation, and then impacton the number of future residents. Maybe the difference isn’t so great then –as hospitals have a reputation to manage, and wish to attract patients.

Which leaves me wondering, what are theoptions for care homes, when faced with online feedback? The options are: sue anyonewho allows people to write critical comments, or choose to engage with theseconcerns online. It’s not an easy path to follow, but embracing thetransformative power of the web might allow care homes to discover a new placein the 21^st Century.

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?

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 were really pleased to hear Andrew Stott, the government's director of digital engagement, talking at the Talk About Local 2009 conference in Stoke over the weekend.

Not only a clear sense of what engagement means and what the web can offer, but a mention for Patient Opinion too. Nice! 

Patient Opinion has been plugging away at innovating in healthcare, using the web, and the power of web2.0. We started with hospitals, and have expanded to cover most of the health service – with our mental health service work spreading across England as we speak! And the Patient Opinion steam engine doesn’t stop there..

For a while, people have been asking us when we are going to cover social care services. Choice and financial considerations are become ever more of an issue in social care, with the continued roll out of individual budgets and personalisation. And with these changes, the need for real time service user feedback in social care is clearly growing.

Well, we are taking our first baby steps into this world, with a pilot project to explore how to extend our platform to residential nursing homes and care homes. Publishing online feedback about residential care homes is not straightforward. Residents are vulnerable, and often not able to speak for themselves. Telling a story about a hospital is fine, as you leave and probably won’t go back again for a while, but residents do not often leave care homes. This might mean we need to change how we think about creating an online tool for care homes.

According to the Department of Health, one in four of us will live in a care home at some point in our lives. That means these homes are part of our lives and our future. But try to find any feedback, or service user commentary on individual care homes online. Seriously, go and Google now, and I’ll buy you a pint if you find one story! This is a much needed service, for a sadly under discussed sector. And we think that Patient Opinion should have a try.

As always with Patient Opinion, we want to use the tools of the web to make it easy and immediate for service users and service providers to work together to make services better. But how best to do this in care homes? The answer might take us away from simple service user stories, and into a whole new online world… So stay tuned for our ideas on what new careworld might look like. In the meantime, if you have thoughts or inspirations about this – we would love to hear them!