We all know about paranoia and the belief that people are out to get us. But is there an opposite state to paranoia? Turns out there is, and it is called 'pronoia', which is the belief the people are plotting good things behind your back. And saying how wonderful you are. Mmmmm - that would be nice wouldn't it?

But may be a tad unlikely? Paranoia certainly seems more believable than pronoia. But maybe that's just the paranoia itself speaking. Take the NHS - couldn't you think of the NHS, at least on its good days, as 'pronoiac'? After all if you are lying sick on ITU there are huge numbers of people striving and planning and plotting all these good things for you. People who have never met you and never will. People in labs and kitchens and offices all across the NHS. All for you. Doing all these good things behind your back just to make you better.

And since yesterday was International Nurses Day let's reflect on the fact that across the NHS thousands of nurses and midwives and mental health nurses and health visitors and school nurses ("The Angels") are actively plotting good for people, seeking out ways to care, to do things to ease pain.

Here is just one example which as it happens is about nurses working in prison.

So remember - just because you're paranoid it doesn't meant the 'angels' aren't out to get you!

Image courtesy of The Times

Statistics have a purpose. You could consider statistics as the translation of events into numbers and percentages. They can be used to explain the reduction in rates of crime, to monitor the economy or provide health care figures. But when it comes to healthcare, do statistics improve care?

Let’s use the Welsh Ambulance Service as an example. Politicians have criticised the service for having reached its eight minute response target 53.3% of the time; its aim was 65%. In fact, a recently commissioned review by Welsh Government suggests “major changes” are required. I am not for a second denying this is a good thing; obviously there needs to be an improvement and it’s good to see these recommendations being put forward. But there is one thing that I feel the numbers 65 and 53.3 fail to do, connect meaningfully with the public or the staff delivering the service.

What’s needed here, I believe, is information that creates empathy.

Empathy is similar to sympathy. You could think of empathy as “I feel your pain”, compared to sympathy as “I feel sorry about your pain”. Moving away from health care professionals and politicians, do the average UK residents empathise with these figures, and the experiences behind them? I don’t feel that this is the case. Figures, statistics and targets are all well and good, but for me they do not compare to a human story. One poignant and profound human story has much more of an impact than all the statistics under the sun. And that boils down to one simple fact; humans empathise with humans, not numbers.

The notion of altruism is fundamental to health care. To really care for others, you need to empathise with them, and have concerns for their welfare. How can we help NHS staff empathise with the people they’re caring for? It is for this reason that I believe personal stories are one of the most effective and impactful ways to improve services. I’ve not been working at Patient Opinion for a long time, yet I can honestly say I’ve already discovered more about the impact the NHS can have on people’s lives than a lifetime of statistics or targets could teach me. And that is all down to the stories I have read, and the people whom I have empathised with, yet shall never meet.

You will more than likely be familiar with the adage “a picture is worth a thousand words”. I believe when it comes to healthcare, a story is worth a thousand numbers, percentages, targets and figures. To truly improve services, you need empathy. And for me, to invoke empathy, you need to hear the human story.

"I liked the love, care and attention of every member of staff, it was terrific .What needs improvement are the toilet seats - those on the wheel chairs and those fitted to the home toilet are useless."

“They are only made for women. Men cannot sit and urinate and open their bowels, as men’s genitals will not sit inside the opening. This means one has to open the bowels, then stand and turn to urinate. With a knee/hip replacement operation it becomes like mission impossible.” [Patient Opinion story 676]

Patients so often know how things could be better. Give them the chance to comment on their services anonymously and they are incredibly positive, thoughtful, specific and generous. Far from being angry – even when things have been less than perfect – most people want to help the NHS.

Of the tens of thousands of stories on Patient Opinion, more than half are like the one that opens this column – positive but with a suggestion about how things could be better. Serious or very serious stories account for around 20%. And fewer than one in four thousand contains an obscenity or swear-word.

Stumbling on the gift economy

So how is it that our experience at Patient Opinion is a million miles from the narcissism of Facebook or the rancour of the blogosphere?

People obviously use Patient Opinion for all sorts of reasons, from gratitude to rage. But the most interesting and useful stories are those that quietly assert their own insight, humanity and ability to help others.

Although it took us a while to see it, we eventually understood that we were running something more akin to the blood transfusion service than to the blogosphere. People were donating stories because they knew it would be useful to other people and because it made them feel good about themselves.

Since information, unlike blood, can be used over and over again insights about post-operative commodes are as useful in Swansea as Southampton. Quite by accident we had stumbled on one of the emerging phenomena of the 21st century – a digital gift economy. There are bigger and better examples - Wikipedia, Linux and Ushahidi - but all are exploring a new terrain quite unlike anything else.

Back to the future

Accustomed to the self-serving rhetoric of the market, we find the idea that significant parts of the human world are governed by giving not getting absurd. Yet, in reality, gift economies lie at the heart of families, teams, friendship – in fact much of what we value most. Gift economies are systems of exchange driven by the rewards of giving not getting. They are destroyed by money (try paying your mother-in-law for the meal she has just cooked you). This means they are largely invisible to markets, businesses and economists.

Giving, and the web of mutual obligation and pleasure that it creates, has been the glue within kinship groups and tribes throughout pre-history. Our predilection for giving is probably rooted in the cooperative childrearing practices that were needed to enable hunter-foragers to find the 13m calories required to raise a human infant to the age of 18 in pre-agricultural societies. All of which fits with evidence that the act of giving, even when invisible to others, increases well being.

Of course, people aren’t stupid and they give stuff for good reasons - to enhance their reputations or create a sense of obligation. So, gift economies are run by ordinary people, not angels. On the other hand, they are very different from markets because the value of the gift is determined by relationship not scarcity. A birthday card made by a grandchild is more valuable than any card that has been bought.

Digital overcomes freeloading

The problem is that gift economies don’t scale well - precisely because they have to be rooted in a relationship. Giving stuff to strangers is a mug’s game. More importantly, economies based on giving physical things tend to run out of either stuff (the empty cooking pot problem) or meaning (the too-many-socks-at-Christmas problem). These constraints limit traditional gift economies to groups that can exchange physical stuff over existing webs of face-to-face relationships.

The digital world changes this. Gift economies based on the exchange of digital goods can access an infinite supply of free gifts to exchange to drive the giving.

The cost of distributing stuff - and tracking who is more generous than who - is also really easy on the web. This dramatically reduces the overheads required to run a digital gift economy.

However, the most important effect of the web is to solve the free-loader threat. Having 250 people turn up to eat your free lunch when you were only expecting the 25 who came with food is a supply problem and a social disaster.

By contrast, having 25,000 people download your (digital) software rather than the 25 you wrote it for is the pinnacle of success. In a digital world, freeloaders become audience and moral hazard becomes reputational pay-back.

Digital gift economies are exciting because they manage, as if by magic, to conjure massive commitment to common ends from a small minority who willingly contribute to the good of all for no financial reward whatsoever. Digital gift economies have appeared because the web has lowered their transaction costs by several orders of magnitude. What was once expensive (Britannica) is now free and better (Wikipedia). All this has profound implications for solving human problems.

Looking for the modern campfire

Understanding digital gift economies matters a lot. Partly, this is because they can be subverted - for the jihadist suicide is the ultimate gift, dead bodies the currency, and video statements the means to gain reputation. More importantly, digital gift economies are a way to release large amounts of free resources in ways that draw us together.

At some deep level, digital gift economies are the answer to what happens after market capitalism and its pursuit of ‘stuff’ has run its course. Gift economies mediate the transactions of the heart and hearth that we still crave. The digital world liberates these economies to massively scalable platforms.

Where money accelerates transactions in the marketplace of desires, digital goods and the on-line accounting of reputations accelerate transactions in these new economies of the heart. The hidden hand of the market is becoming matched by the hidden heart of the digital gift economy.

And along the way, when we strike the magic Wikipedia moment, massive social wealth is created as if for free.

No matter that constructing working digital gift economies is a hit and miss affair just at the moment. The point is that we are on the way home, that we have found the other half of the market, the half that existed around the campfire before the market was dreamt up.

Digital gift economies release creativity, action and meaning from their tribal roots and allow them to embrace the global.

Fixing the toilet seat

And what of the toilet seat? Well, when the matron saw the posting, she rounded up as many different kinds of commode as she could and asked the next cohort of men to decide which they liked best - and that is what they now use.

I remember the quiet thump of NICE guidance arriving at the practice from the days when I was a GP.

The day the latest NICE missive on treating depression in primary care arrived we happened to publish this story on Patient Opinion:

“Since 2000, I have suffered three episodes of psychotic depression. On each occasion I danced myself back to health. My mother also suffered from depression and in the end committed suicide. The care I received has been good, but it is the dancing that has both lifted me and grounded me. I believe I became ill because I did not listen to my feelings enough and lived a life that was not true to myself. Art is an important part of self-discovery.”

Needless to say dancing did not figure in the NICE guidance.

So what should we make of this?

You might think it is simple – my job as a GP should be to make sure that the patient gets the evidence and nothing but the evidence.

But I have now asked audiences at many conferences - well over a thousand NHS staff - what they, personally, would want if they or their daughter was depressed. Would they want their daughter’s GP to spend her ten minute consultation implementing NICE guidance? Or would they like the GP to explore how their daughter could “live a life more true to themselves?”

Less than scientific, I grant, but audiences vote overwhelmingly for exploration not evidence.

This tensions between the evidence and what patients – and perhaps the majority of NHS staff – want are deepening because the web is changing the nature of knowledge itself.

In the old days (that’s the 20th century to you and me), when evidence-based medicine was still in nappies, experts used to filter out anything that wasn’t deemed essential. This gave them a lot of power. Now the web (aka Google) just filters the important stuff forward, leaving everything else, both sense and nonsense, just a click away. Each article, each reference, each ‘fact’ links out to an infinity of interpretations.

Evidence no longer seems so simple when everyone can see all the gory details under the bonnet – all the biases and conflicts of interests laid bare and all the counter arguments snaking away into the distance. (This shift from ‘filter out’ to ‘filter forward’ is brilliantly explored in David Weinberger's book 'Too big to know'). 

We live in a world drenched in information; a world where it is becoming harder and harder to say why my view is better than yours. Meanwhile, the NHS has morphed Henry Ford's adage: 'You can have any colour you like as long as it's black' into 'You can have any treatment you like as long as it's NICE'.

In this centralised, evidence-dominated world deviating from the straight and narrow path(way) is a Bad Thing and the state has erected a regime of discipline (aka NICE, QoF, many other acronyms) to make sure that frontline staff do what is “best for patients” (though not necessarily best for “this” patient).

The question is not whether this is wrong (lots of diabetics and heart patients and asthmatics are getting more consistent care as a result) but whether it is sustainable in the age of the web.

It’s not just that the web delivers a torrent of conflicting “facts” to everyone connected to a smart phone, it also gives everyone a voice to comment, discuss and dissent. Indeed, it sometimes seems that Mystic Meg's thoughts on homeopathy carry as much weight with the public and more weight with the Daily Mail than all our finely polished pearls of wisdom.

So what’s to learn from all this?

Firstly, that people are increasingly using their public voice to articulate what they want.
Secondly, that these wants may not correlate with the evidence.
Finally, that these public voices and the increasingly conditional nature of “facts” is likely to lead to a crisis of authority within the current NHS mindset.

NICE has been a handy way to hold the line against demand, but it rests on the assumption that evidence and the public interest can be forged into workable political compromises that make health care affordable. As the idea of authority based on knowledge becomes contested, this is a line that may not hold.

Knowledge is no longer a thing, a summation, a life time spent studying the stars. Both knowledge and authority are becoming properties of the network itself. Our world is already full of informational fabrics. Google was our swaddling clothes, wrapping us in any information we desire. GPS was our baby bouncer, guiding us through an always-mapped universe. Mobile phones have killed solitude and Facebook makes a billion social networks visible.

Information fabrics are created by layering a sophisticated technology over a humming human network. Imagine the NHS clocking it's one million consultations a day through an electronic record that correlates symptom inputs with therapeutic outcomes and you begin to see, however dimly, the future of medicine.

That future is a socio-technical dance of millions of interactions, each mediated at human scale, but guided by the collective, ever-increasing knowledge inherent in the network itself.

Blog originally shared on E-Health Insider here, as part of a series of blogs from Dr Paul Hodgkin, our CEO and resident EHI columnist. Follow Paul on Twitter @paulhodgkin

It’s been an interesting week in the life of Patient Opinion in Scotland – “momentous” is how one of my colleagues described it: and it is!

It was the week during which the Scottish Government formally and publically endorsed the use of Patient Opinion, encouraging and supporting health services across Scotland, ideologically and financially, to employ it as one of the mechanisms they use to listen to and learn from patients.

We are delighted to receive this endorsement and to know that the Scottish Government fully appreciate the fundamental importance of Patient Opinion’s independence, openness and transparency.

We were also delighted and surprised to hear that in February the Scottish Parliament passed a motion commending the work of Patient Opinion in Scotland: proposed by the Shadow Health Secretary for Scotland and supported by MPs from across the parties. I’d like to thank all those involved for your welcome support.

By default, this endorsement encouraged the public too, to find Patient Opinion and to share their stories. We’ve seen a fantastic increase in Scottish stories specifically and traffic in general on the site these past seven days.

So it has been an exciting week for me: a few firsts... met the Health Minister (after getting caught in sleet and snow - I hope he realises my hair doesn’t usually look like a bird’s nest!), was on BBC Radio Scotland’s Call Kaye show (and survived!) and came home from the Scottish Recovery Network Gathering event with lots of fudge intact (unheard of!).

I don’t want to offend anyone but …. the most exciting thing about last week was meeting Luckybiker who had shared his experience on Patient Opinion. We don’t really get to meet or speak to authors in the flesh very often as people share their stories anonymously, of course. Mr Neil was keen to meet someone and Luckybiker obliged.

It was great to see him fighting fit (after a life threatening accident), chatting to the Minister, the press, being photographed and filmed. It was especially great to see him with the Scottish Ambulance Service staff, regardless of whether they’d been the ones to race to Luckybiker’s rescue; they were obviously pleased and intrigued to meet this person who’d thanked the service so publicly.

To me, that’s what Patient Opinion is all about bringing people together, helping services and patients to listen to each other and to make a difference.

It has been a great and “momentous” week for us and for patients and health services in Scotland but there is still a great deal of work to be done.

Onward...