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.

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?

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! 

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’.

When a word moves from the realm of the geekerati into the mainstream media, it's often a sign that some kind of cultural shift is afoot.

And so it is this week, as Victor Keegan writes an interesting piece in Technology Guardian on "hyperlocal". And, satisfyingly, Patient Opinion gets a mention.

To be fair, although we do offer some kind of hyperlocal potential, I don't think we have yet delivered it sufficiently. Perhaps our new API and RSS feeds will help a bit (see blog post not quite yet written), although we'll need to find some lat/long data to make them properly useful.

But Keegan's piece prompted a different thought: so far, the emphasis of hyperlocal seems to be almost entirely on providing information, rather than supporting civic involvement or community action. Again not yet delivered, but very definitely on the Patient Opinion"to do" list, is something a bit more along these lines.

As always in times of crisis and upheaval, we must recall Marx: "Bloggers have only complained about the world, in various ways. The point is to change it."

I think this applies to hyperlocal too.

We quite often get stories that you would think demand instant action - for example Why was my dad left lying naked on the bed? or patients being able to see others urinating. But then nothing happens. In part this is because managers and staff see such things as regrettable rather than important. Sure, it shouldn’t have happened but nobody died and the real thing to get sorted is to make sure Mrs. Jones in Bed 5 doesn’t breach the 4 hour waiting target.

But in part it is because web-based feedback is so low-friction. For the first time comments are beginning to arrive at the speed of light (or at least the speed that we at Patient Opinion can handle them!) whilst the system designed to receive them moves with all the urgency of a sloth with toothache. The web makes transactions faster and reduces the transaction costs for citizens but it does not reduce the costs of responding for organisations nearly as much. In short web 2.0 is citizen-centric not organization-centric.  Faced with this the  temptation for organisations is to simply cut and paste formulaic replies. This plugs the managerial dyke but does nothing for the citizen or the service.  

From the point of view of service provider – any service provider, NHS or commercial, health or otherwise – this problem can only get worse as more and more people use the web to tell you what they think of you . Two outcomes are then possible. If most web-based feedback is ignored then citizens will tire of giving it and the flow will cease. Alternatively at least some organizations will re-organise themselves and really begin to listen and act on what their customers are saying. Organisations that are driven by sales and profits are likely to be more responsive but what will make public sector organisations responsive short of turning them all into profit centres and losing all the other, wider benefits of them being a public service?

Part of the answer here lies in seeing web-based feedback as lighter, less ponderous than more traditional feedback.  Citizens do this already of course – conversations on the web are just that: fast, transient, informal chatter.  But it’s hard for organisations – especially health service ones who are addicted to the iron cage of bureaucratic rationality (also known as systems, procedures and protocols). For them it’s as if all your life you’ve been building a zoo where all the animals are safely contained and ordered and know when it’s their feeding time and then suddenly you find your job is to play in a jazz band –and to do it fast, hip and on the public stage of web where everyone can see you.

The real answer to this conundrum may lie with front line staff who know in their hearts that real care, great care, always involves as much fluidity and creativity as it does protocols and procedures. Getting things right, giving personal care, has always been about relationships and relationships are perpetually in motion, conditional, responsive each to the other.

So the lessons for us is to try and get the stories on Patient Opinion directed to front line staff rather than middle managers.  And that front-line staff should be empowered to listen, respond and change as a result of these dialogues. In this model web-based feedback becomes a way to nudge, remind and renew the professional heart that has currently been obscured by 15 years of systematising, evidence-based care. Conversations with patients and families after the event, about what could have been better, then become the multiple, systematic drivers of better care. And the web-based exchanges that trigger these thousands of micro improvements can  be summed into reputational measures that rank wards and departments and hospitals for their actual, public, proven ability to listen and learn from those they serve.    Now that's what Lord Darzi would really like.

We started Patient Opinion because we thought that it would be great way to aggregate and direct the collective wisdom of patients and carers. Then we realised that it was better to think of Patient Opinion as a way to create thousands of transparent, structured conversations between patients and providers with us acting as a giant switch board getting stories and responses to just the right people.

But sitting in my GP’s chair, a final lesson emerges in all this: The power to tell and re-tell the story of illness is part of how we all make sense of the meaningless depredations of disease. Telling your story on the web offers, for those that want it, new ways to do this: Our son was just twelve days old when he died. Throughout this distressing time the staff on the Neonatal Unit were outstanding. They treated him with dignity throughout his short life..…  the staff made us feel that his life was as significant to them as it was to us. Nurse Jan made a print of his feet and hands and put them together in a card with some clippings of his hair. On Father’s Day there was some chocolate for me that was labelled from him. (Full posting) The telling of such stories, the ability to speak even whilst grieving, has therapeutic benefits.

Add the promise that by sharing what you have learnt you might be able to help improve a small part of the world for everyone and the sick are offered that most precious thing, the possibility of themselves being needed for their insights, of giving some thing back to the community of the well, just at the moment when they feel at their most powerless. That the new forms of web-based voice can go beyond the passivity of suffering, and begin to make sense of what had previously been meaningless is perhaps their greatest promise:  ‘Mum’s illness was awful but we helped change things for everyone!’

The act of helping others is consoling because it reconnects us at a time when we are at our most alone. For the first time improving services can  be driven by the intrinsic desire to find meaning within the experience of disease.  Multiplied by the hundred thousand as only the web can, these transparent, directed dialogues move us beyond exit and voice and offer new glimpses of redemption in a post-market world.