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

Private sector principles and ideas encroaching on the NHS are viewed at best with suspicion and at worst as absolute heresy. Paraphrasing Orwell’s Animal Farm, public sector good, private sector bad. Be it PFI, Circle, Serco or Virgin, it’s seen as the thin end of the wedge or the abolition of the NHS.

I am known to tweet ‘occasionally’ and 3 Twitter exchanges yesterday got me thinking. I tweeted Northern Rail complaining about the lack of carriages on my train and Tesco and G4S about the security van blocking a disabled space at my local supermarket. My middle aged tetchiness is clearly catching up with me!

In each case, I got a personal, courteous and informative response and the Northern Rail person even had a sense of humour. I felt valued and listened to and although I doubt my tweets changed anything, I was properly acknowledged. Believe me I am no fan of Tesco and G4S’s Olympic fiasco is fresh in my mind. However, I have to say that their tweets definitely made me view them slightly more positively.

Though staff in the NHS are getting better at online engagement, I wondered what a typical NHS response would have been in the same circumstances. I would have been disappointed, but not surprised, to get a standard response of “Thank you for your feedback, please contact PALS”. I think that is the customer service equivalent of saying it’s our way or the highway.

Northern Rail, Tesco and G4S didn’t tell me to comply with their process and were not guarded about their responses. They accepted that I wanted to interact with them on my terms on my chosen medium and respected that. They didn’t need to know who I was, what the name of staff were, and they didn’t seem worried that we were having this exchange in public.

Increasingly, patients are comfortable communicating with services in this way. And though it’s tough, and has new challenges, the NHS can rise to that challenge – with the right staff, the right guidance and a bit of bravery.

Indeed, as Robert Francis has just said in his report into Mid Staffordshire:

“In a society that increasingly relies on internet and social media based applications for its information, the days when it might have been justifiable to rely on a periodic conventional survey have now passed. Such a method suffers from a number of disadvantages, not least of which is that its results tend to arrive too late to be currently relevant.” vol 3 p 1664, Robert Francis QC, Feb 2013

Those who use Patient Opinion most effectively deliver great customer service in real time online. A recent and rapid response from East Surrey Hospital left a happy patient exclaiming: “The response from the senior ward staff has been fantastic! All in all I experienced the true NHS, caring and treatment second to none!”

In Nottingham, staff use feedback as a learning experience, without having to meeting the people involved. In this example, Sara Jane Ashmore, the Head of Inpatient Nursing Services says ”I will pass this to the team on the ward and the ward sister and I will discuss in more detail the issues you have raised to see how we may further improve our care delivery”.

And charmingly, staff here learn about ‘pizza massage’ from a patient – and explain they are keen to learn from the suggestion!

So, there are some NHS staff who get it really right, but others clearly have much to learn from the private sector!

(image source)

I published a story this week, the title of which was “The death of my partner from metastatic lung cancer”. It does not portray an example of person centred care. I don’t imagine it’s a story any health care worker would want to read about their service.

I really connected with the story, my Mum died of lung cancer which metastasised and I was with her every hour for the last four days of her life. Twenty five years on I can still make a connection with the despair I felt watching and waiting for her to die.

However, having said that I don’t really know what compelled this particular author, Malin, to share their experience on Patient Opinion.

So the story went onto the site and sent to all the right places. We waited. Would this story remain unresponded to? Stories like this with no response, make me question if we at PO are doing the right thing.

Within a couple of days author received two responses; one from NHS Highland and one from the Scottish Ambulance Service. Simple, empathic, thoughtful responses to a devastating story.

My watch word is “it’s not rocket science”, making that human connection. Reading between the lines, what do I see from reading the responses? People who work in health services who behave in a very natural, human way aside from processes, referral to complaints procedures and departments. An individual who has been “released” to grieve, knowing that, when they are ready, someone will listen and might take on board what they have to say.

It’s become not just online feedback, but part of the healing process.

When the Scottish Public Service Ombudsman says:

“I feel strongly that if patients, friends and family were being listened to effectively, regulators should not be highlighting the same problems months and years after complaints have been made on the same points”.

I think he wants to see more of this kind of reaction. More listening, more openness, more change.

The story is not “resolved” but I feel some relief that Malin knows they have been listened to and there seems to be a will to look at what can be done to make sure others don’t have the same experience - I hope Malin does too.

‘Having a heart attack’ is not the same as ‘having a Mercedes’. Which is of course a statement of the bleeding obvious once you put it like that.

Fantasising about whether you would prefer a Mercedes or an Audi is standard consumerist fare. Fantasising about whether you would rather have cancer or a stroke is pretty odd.

A category error

But if it’s all so obvious, how come we spend so much time in the NHS talking about choice and the patient as consumer? After all patients are supposed to act as consumers of health aren’t they?

They are meant to approximate, somewhere deep in their bowels, to that rational economic actor who sums up the pros and cons of every decision and then acts accordingly.

But if, in fact, ‘having a heart attack’ is completely different to ‘having a Mercedes’ then taking consumerism’s easy virtues into the heart of healthcare could be a big mistake.

No matter that we may want patients to act as consumers because it suits our economic and political models. No matter that it really might give parts of the NHS a much needed boot up the backside if people were a bit more picky.

If the truth is that, when faced with the prospect of a massive heart attack or a life with dementia, most of us begin screaming and sweating and praying, then we are not dealing with consumer behaviour but with existential terror. Less emporium of pleasure, more crematorium of terror.

But I can hear you protesting that people do want choice, they do want to be involved in their care and to have a say. And you’re quite right, but to call this behaviour ‘consumerist’ is to mistake its inner reality.

My experience as a GP was that when we hit the “Have I got cancer Doc?” moment people want many things – time, information, a sense that they matter to the person answering the question – but choice of provider is not high on their list.

When faced with death or one of his lesser cousins our warm, human bodies take charge. We do not long for more choice but rather for the sweet smell of mother and escape from our paralysing fears.

Speaking up and getting out

Once we have had the treatment, however, it is a different matter. Released from acute anxiety and buoyed by relief, or anger at the indignities that we have survived, then post-treatment, we begin to be ourselves again.

We share what happened with our friends and re-tell our battle with cancer or the ward sister as part of our moral rehabilitation.

Along the way, we happily take part in a survey or fill out a Net Promoter Score because we want to “give something back.

For those who believe that markets in health care are important, this magically reconfirms that patients really are consumers, after all, even if consumers in real life are far more concerned with getting than with giving back.

In policy terms, this means we may have been putting the consumerist cart before the treatment horse.

If people behave more like consumers after treatment, but only sporadically before, then ‘voice’ is more important to them than ‘exit’.

In other words, being able to influence a service, with a view to helping it to improve, is more important than being able to quit it in favour of a different provider.

Interestingly, this also confirms our collective experience over the last ten years of trying to offer choice of provider to patients – the little beggars are just not that interested in it.

Speech is silver (choice costs gold)

All this matters because exit is the theoretical basis for trying to create a market in health care. The idea is that if enough people leave a service it will buck up its ideas or fail; in which case something better may take its place.

Since the economic and political costs of markets in the NHS are rising (just ask former health secretary Andrew Lansley) whilst those of voice are falling (just look at Twitter) a revolution is afoot.

In the future, users of health services are likely to exert pressure primarily via social media rather than market choice.

The above (including image) is taken from Dr Paul Hodgkin's column for E-Health Insider (27-11-12).
You can find Paul on Twitter under @paulhodgkin.

Paul, our CEO, shares his reflections on the promised digital revolution in the NHS, and his musings on what it might mean for patients.
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