A project called myPolice won Glasgow’s Social Innovation Camp last weekend (congratulations), and was soon being described as like “Patient Opinion for the police”. Becoming a cultural reference point for siCamp felt good!

But it wasn’t long before the good old British press brought everyone down to earth, with a fairly misleading piece in the Sunday Times titled “Warning over ‘shop a cop’ website”. You get the picture.

To their credit, the team behind myPolice have busily been blogging their own point of view, and others have stepped in with incisive commentary.

There’s always a certain fascination in watching how “old media” react to new media innovation. They seem to zig-zag between wide-eyed wonder and snide dismissal, depending on the time of day.

In this instance, the piece was predictable, if a little depressing. But coming from a health research background, what struck me was how negative the press can be about not-for-profit social innovation, while endlessly carrying uncritical and hyped-up reports of “medical breakthroughs” and new “wonder drugs”, with little solid evidence and clearly commercial motivations. Pharma innovation good, social innovation bad?

Somehow, the Sunday Times even managed to misrepresent us too, describing Patient Opinion as a site “which encourages online criticism of the NHS”. I mean, how hard is it to turn up at the site and see for yourself?

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’.

Nobody would deny that we've seen enormous improvements in healthcare in the last 25 years - and not just in medical and surgical interventions, but in the organisation of care. Look at those falling waiting times!

But once in a while (or maybe a bit more often than that) we get a posting on Patient Opinion that makes us blink and rub our eyes in astonishment. Like this one, which arrived last week:

Last week I had to wait for 2 hours to see my GP, 45 minutes of which I was standing in a queue. There was a heavily pregnant woman in front of me who was obviously finding standing for so long hard, so I had to tell her I'd queue for her and let her back in at the last minute.

Sorry? Did you say standing in a queue?

That can't be right. Maybe the relevant GP surgery could get in touch and tell us why we've misunderstood.

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're recruiting - again.

Recently we promoted Kate - the lynchpin of posting moderation - to head up our new pilot project on web feedback in social care (residential homes, to be precise). So now we have to replace her.

We're looking for someone enthusiastic, sociable, and not too scared of the web.

Here's the job description. Get in touch if you're interested.

Just a quick note to say that the intrepid Alex Stobart is holding the second ScotWeb2 event in Edinburgh on 19 June.

The last (and first) one, back in October, was a lively and informative affair with a great bunch of people. I feel we should be calling this one ScotWeb2:2.

Anyway, I'll be there talking about Patient Opinion's new programme of work with all the mental health trusts in England, which I'm extremely excited about. I do think the web offers extraordinary new opportunities to users of mental health services, and I'm hoping we can make a worthwhile contribution to the whole area.

And who knows - maybe we can work out some way of providing a similar service in Scotland? We just need to find some people who could help make it happen.

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.

As we start to receive mental health postings from around the country we can look at areas that are of particular concern to service users and carers. Although for some, crisis services have been really useful and effective, for others there have been real problems getting access at the point of need. Check out these postings below, and have a look at what is on the Patient Opinion site and if you are able, contribute some feedback of your own.

• Crisis team access
• Lack of support from mental health services
• Eternally grateful to excellent crisis team

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.

Now that we are rolling out PO for mental health it is great to see more and more people from round the country contributing postings including carers. Here is one perceptive and powerful recent posting which makes a constructive point about how things could be improved and another that takes more of an overview.

http://www.patientopinion.org.uk/opinion.aspx?opinionID=19043

http://www.patientopinion.org.uk/opinion.aspx?opinionID=8806