Connecting people up is what Patient Opinion is all about. Connecting the insight and wisdom of past patients to future patients. Sending your story to the ward, and then getting their response back to you and the local PCT.  That’s what we do.   

So it was great to read hear Nicholas Christakis talking about his latest work on social networks on the RSA down load service. Christakis is a medic at Harvard but also a sociologist who has spent the past 15 year studying social networks.

Turns out that all sorts of things can be seen ‘flowing’ through networks – including many sorts of behaviour. If I’m obese then it’s more likely that my friends will be obese. What’s more if my friend’s friend is obese then I’m more likely to be obese. And the same effect works for happiness, or drug use, or altruism. People who know each other face to face create similar patterns of behaviour in each other and this effect is detectable for up to 3 degrees of friendship – in other words in friends of friends of friends who of course have mostly never met each other. Which is weird but if nothing else shows how profoundly social humans are.

So what’s this got to do with Patient Opinion? Well we’re thinking of making some of our connections more visible to everyone. First we want to explore letting ‘friends and family’ follow a particularly story. These will be people who the author has invited to follow their story and who have clicked ‘Yes’ on the invitation. Every time there is a response to a story these people will be notified of it, just like the original author is. We would then display the number of Friend and Families that were following each story.

Second we're thinking of doing the same for organisations and other stakeholders. So if the PCT, the hospital and the local LINk are getting automatically notified of that particular story then you‘ll be able to see them just by clicking on the ‘Who’s tracking this story?’ button. That way it’s clear to everyone whether we’ve succeeded in getting any given story to just the right people who need to hear it.

But perhaps we should let anyone, any member of the public, follow any story. Surely that could be even more effective. But Christakis work on networks indicates that this isn’t so. It might be gratifying to know that 63 people (or 263) are following your story  but FaceBook ‘friends’ are not real friends (and do not exert Christaki’s's network effects on each other). So what we’re really interested in at Patient Opinion is how to leverage each author’s network of ‘real’ friends and families on behalf of their story. And from the hospital’s point of view knowing that the mini-network of highly involved people around each story see the hospital's great response and the changes that have been made means they are likely to become real ambassadors for the hospital. Even when if in the original story things didn’t go so well.

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.      

Watch.UsNow is a great video about how the web lets people take things into their own hands and just get on organise stuff. There’s Clay Shirky, Charlie Leadbetter, William Heath, Lee Bryant plus mums from netmums and many others all talking very good sense. Well worth a quick watch (and thanks to Jonty  at Demos's Progressive Conservatism project for bringing it to attention).  

But looking at it I realised that Patient Opinion doesn’t quite fit. And the reason is that we don’t ‘do community’ in the same way that netmums or Facebook or Couch Surfers do it. For them the community is the whole point – they are about giving people a place where they can do what they want in ways that they are passionate about. This is what Web 2.0 has been all about up to now and it’s releasing a wave of mutual help and support that will, for sure, change the world in just the ways that the Watch.UsNow video explains. 

You can easily imagine similar communities building around Patient Opinion with people discussing services for endometriosis or hospitals  in Wolverhampton. And of course we’ve talked long and hard about whether Patient Opinion should do this. Our worry is that such groups would quickly turn into moaning arenas or gravitate to the ‘let’s go beat them up’ approach. But perhaps we’re doing everyone a disservice by such assumptions and we should trust people more and go test it out. 

But there is also another reason why we don’t quite fit into the standard web 2.0 model and that’s because we’re focused on changing services whereas most of the standard bearers for  ‘web 2.0 is a revolution’ are focused (rightly) on their members interests. So netmums is about mums not primarily about services for mums. And Couch Surfers is about finding congenial  people to stay with for free in new cities, not about improving travel services.  

Patient Opinion together with sites like MySociety are doing something different – we’re trying to engage the service, to get busy staff to act in new ways. This is very different from setting up a community of users ‘outside’ the system and who are all too easily perceived by staff as being critical. So it is possible that vibrant communities of users might indeed make our  core task – improving services – harder not easier. 

This isn’t an either/or of course – sites that focus on mutual support or benefit and sites that want to change the system are both really worthwhile. But Patient Opinion’s task of changing the system by engaging many thousands of staff as well as  tens of thousands of users, is distinct for two key reasons. Firstly it creates a different sort of public value to groups focused on mutual support. Second if we are successful, it opens up different revenue streams beyond the old stalwart of advertising that everyone and his dog is trying to make a living from on the net. After all if we could help patients and carers initiate 10,000 service improvements a year this will create significant value for the NHS. If we could find ways to extract this value and feed it back into more patient-initiated change - now that would be exciting. Then there really would be money in them there pills!

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.

Sitting on a working party the talk was all of governance, protocols, making sure that ‘the lessons are learned’. Life was proceeding as it has in the NHS for several decades on the general assumption that if control is good, more control is better.

This might be called the One Last Heave model of service improvement: having implemented  the 137 recommendations made by Lord Laming following Victoria Climbie’s death, and being faced by the appalling case of Child P, the system homes in relentlessly on ‘further lessons that must be learnt’, another inquiry, yet more checks and controls. One Last Heave will get us to Nirvana where bad things can’t happen. 

Such is life in an environment where systems are tightly coupled. And sitting there not doing full justice to my working party, I realised that’s been the major characteristic of the last 20 years of my life as a clinician in the NHS. We’ve been busy using the power of newly digitised practice to build ever more tightly coupled systems. More and more is governed, linked, joined up, defined, evidence-based. Variation has been driven out, and following agreed practice is valued over the exercise of judgement and discretion. 

The dream behind building tightly coupled systems is that they will lead to control, equity and cost-effectiveness. Which may be so in the short run but in the longer term tight coupling leads to rigidity, risk aversion and declining innovation. Tightly coupled systems deliver decreasing returns – every additional goal, policy, organisation, partner or issue leads to less return.  There are two reasons for this. Firstly because variation is seen as the enemy: noise, randomness, error and failure are all things to be engineered out where as in fact they are often needed to make the system work. And are an important source of insight and innovation. Second the coordination costs of tightly coupled systems rise non-linearly as the number of things to be coupled increases.  So ‘joined up government’ quickly becomes toxic.   

And now we are faced with an economic situation that gets ever more uncertain. It is unlikely that the ‘one more heave’ philosophy of tightly coupled systems will work in a severe recession. Being risk averse, relying on protocols, KPI’s and micro-management will fail in the newly austere state because such approaches deliberately exclude the variation from which the new solutions will emerge.

The answer to all this? Look for systems that have increasing returns. Google, Wikipedia, e-Bay, the web itself – all deliver increasing returns. The more people use, edit and review Wikipedia the better it becomes. Such systems are almost always loosely coupled. No body is forced to use Google, no one accredits e-Bay buyers, and there was no government roll out plan to teach teenagers to use SMS text messaging. Is it possible to build increasing return systems that help improve health? Don’t know yet, but if it is I know they will look more like the net than NICE, more like Wikipedia than Whitehall.