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Archive for August, 2008

Because I deal with stories every day, I decided to learn more about the place of narrative in human experience, but coming from a medical perspective I couldn’t find much about narrative, even though there are emerging disciplines of “narrative-based medicine” and “narrative-based research”. Instead, I found the best thinking on storytelling lay in the world of the Humanities. In fact, Richard Kearney’s “On Stories” gave me more insights than any other single work.

It was interesting, therefore, to read this perspective, from Scientific American, which describes how researchers are beginning to study the use of narrative in order to gain insights into the workings of the mind. “Why does our brain seem to be wired to enjoy stories? And how do the emotional and cognitive effects of a narrative influence our beliefs and real-world decisions?”

The first problem scientists face, however, is defining a story! What exactly constitutes a story?

Exposition contrasts with narrative by being a simple, straightforward explanation, such as a list of facts or an encyclopedia entry. Another standard approach defines narrative as a series of causally linked events that unfold over time. A third definition hinges on the typical narrative’s subject matter: the interactions of intentional agents—characters with minds—who possess various motivations.

I loved the conclusion they reached –

However narrative is defined, people know it when they feel it. Whether fiction or nonfiction, a narrative engages its audience through psychological realism—recognizable emotions and believable interactions among characters. “Everyone has a natural detector for psychological realism,” says Raymond A. Mar, assistant professor of psychology at York University in Toronto. “We can tell when something rings false.”

In other words……you just know! How often this applies in life! How do you know when you are well? How do you know when your energy levels are good? Guess it’s the same when it comes to recognising a story. It’s a function of human intuition.

Do you become immersed in stories? Completely absorbed by them? Well, it turns out that if you have prior experience which is similar to that of the characters in the stories then you are more likely to become immersed in those stories. This is kind of obvious. It means that you are more likely to become absorbed by a story if you identify with the characters. One step beyond this conclusion is interesting though…..those who become more easily immersed in a wider range of stories have been shown to be those who have the greatest capacity to empathise. Interestingly, this can work the other way too…….you can increase somebody’s ability to empathise by teaching them literature! The ability to empathise is the ability to imagine what’s going on in someone else’s mind – scientists call this “theory of mind”. Theory of mind develops in children around the age of 5 and is a key part of the human ability to live in communities. So, storytelling also has the possibility of improving our skills in living together.

Other scientists have studied stories to see what they reveal about human motivations and goals –

As many as two thirds of the most respected stories in narrative traditions seem to be variations on three narrative patterns, or prototypes, according to Hogan. The two more common prototypes are romantic and heroic scenarios—the former focuses on the trials and travails of love, whereas the latter deals with power struggles. The third prototype, dubbed “sacrificial” by Hogan, focuses on agrarian plenty versus famine as well as on societal redemption. These themes appear over and over again as humans create narrative records of their most basic needs: food, reproduction and social status.

Are these the basic, common themes we find in stories? Do you agree that stories reveal the common human patterns of motivation and desire?

Let me finish this post with the final point made in this interesting article – the power of stories to influence us. This is well understood by advertisers and PR companies, but this point really struck me –

…..labeling information as “fact” increased critical analysis, whereas labeling information as “fiction” had the opposite effect. Studies such as these suggest people accept ideas more readily when their minds are in story mode as opposed to when they are in an analytical mind-set.

Now isn’t that interesting! Stories are more likely to convince people than “facts”!

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Belief

All human beings try to make sense of their lives. We each have different ways of doing that and we use different frameworks of understanding to do that. (Owen Flanagan uses the nice concept of “spaces of meaning“)

With that in mind, take a look at this small bookshelf. I saw this in a little independent bookshop yesterday. It’s the section of the shop labelled “Religion” and “Esoteric”. Those are two interesting words to put next to each other to begin with……

The Religion shelf in the bookshop

Check out the book titles (if you can’t see them clearly click through to the flickr page where I uploaded a copy and click “all sizes” to see a larger copy of the photo). Along the top the shop has a New English Bible, books of psalms, the Q’ran, books on Tibetan Buddhism and Zen……this isn’t an unusual selection these days, even in a village bookshop in the Scottish Highlands.

What do you think about the books on the bottom shelf? There’s a book about the occult in London, a book about Celtic myths, one about Druids, and “Derren Brown’s Mind Tricks”!! That’s the one that struck me! Derren Brown, for those of you who don’t know, is a hypnotist and magician!

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Ben Ledi dark sunset

I swear the sky I see from my window looks different EVERY day. I’ve posted photos of the sunset over Ben Ledi before but tonight, in the last hour, I looked out and saw this sight.

I have never seen anything quite like this. It’s amazing.

Funnily enough, I just finished reading a book by Pierre Hadot. The book is called “N’oublie pas de vivre” (Don’t forget to live). His key word is – emerveillement – which you could translate as “wonder”, “marvel” or “awe”. If you want to live, to really live, (as a hero, not a zombie, as I’d put it!), an attitude of “emerveillement” will do it. The more we wonder, the more amazing we find daily life, the more we feel the thrill of being alive.

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East meets West

david hume and the geisha

This young woman was standing next to the statue of David Hume on the Royal Mile last weekend. She was one of a number of people who perform as “living statues”, standing very still for long periods as people gather, watch, photograph and maybe leave some money. It’s such a strange phenomenon, this kind of performance. What amazes people is their stillness. Isn’t that interesting? In the bustle and hurry and continuous doing of life passers-by are caught by these artists’ stillness, their not-moving. And what effect do they have on the crowds who rush by? Well, either only a passing glance, or they are caught. They stop and they stand and they watch, sucked into a moment of stillness. It’s quite something to see.

But it was the juxtaposition of this performer and the huge solidity of David Hume’s statue which especially caught my attention. Set me off thinking all kinds of things……..the relationship between contemplation and philosophy; between thinking and acting (who’s thinking and who’s acting here?); and, probably because this is the EIGHTH day of the EIGHTH month of the two thousand and EIGHTH year today and at EIGHT minutes past EIGHT tonight, the Beijing Olympics will commence, it got me thinking about the intermingling of East and West, of different traditions, different views, different cultures and how they influence each other.

This is a time of change. The old orders are creaking and shaking. As China engages with the rest of the world and the rest of the world engages with China we’re going to have a lot to learn about each other and, actually, right at this moment, I find it awe-inspiring and mind-boggling. I think many of our presumptions are going to be shaken to the core. (BBC2’s Culture Show special on China is an example)

It’s times like these when great opportunities arise to wake up from un-reflective, passive ways of life, (zombie life), to creative, radical, active ways of life (hero life).

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buddleia
You know this plant? It’s a Buddleia. People who love butterflies plant it in their gardens because of its reputation for attracting butterflies.
Well, I’m sure it’s not the Buddleia hanging off North Bridge that attracts all the visitors to Edinburgh in August every year, but something does (and it’s not the sunshine…….)
royal mile
Although the rain doesn’t stop them enjoying the pleasures of al fresco drinking and dining…….
cafe on the royal mile

Thousands and thousands of people come to Edinburgh in August for “the festival”.

The Royal Mile becomes a vast pitching ground for the hundreds of theatre groups and performers trying to persuade visitors to come and see their show.
fringe posters
fringe contenders
It can all get a bit much, but if you need to escape from the crowds, Edinburgh has it’s emptier spaces to explore.
the crags

I suppose some of the things that repeatedly amaze me about Edinburgh at this time of year are the chances to really see and feel the rich diversity of life, the natural exhuberance of people and the overflowing expressions of creativity and passion. It’s worth having a day wandering around and just soaking it all up. But don’t forget your umbrella!

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Juliette Binoche is one of my favourite actresses so I was delighted to read a short interview with her in “Psychologies” magazine this month. The article referred to her creative range – as an actress, a painter and, now in London, a dancer. Even if you just check out her filmography, it’s clear this is someone who likes to push against her boundaries. In the interview she reveals a number of her key beliefs –

  1. Risk taking. “It’s when you are taking risks that you know what you’re capable of. You discover your strengths, and your self. So that’s why sometimes you have to push yourself a little bit in order to surpass your expectations.”
  2. Non-attachment. “I like to leave habits behind. They scare me. Life isn’t about hanging on to things”
  3. Learning. She’s a great example of what Carol Dweck calls “the growth mindset“. Asked about her parents divorce when she was young and being sent away to school, she responded “I took it as a learning process”
  4. Living in the present. “It’s important to me to make the present as beautiful as I can”
  5. Potential. Asked if creativity can be learned she said “We all have potential. We just need to stop being afraid of exploring something new, something daring. Someone said “We’re more scared of our lights, of our possibilities, than of our darkness” Why are we so scared of new beginnings?
  6. Internal locus of power. Like William Glass she clearly believes in Choice Theory. “We always think the solution is external, not internal. But real change comes from an internal shift”
  7. Importance of human connections. “I cannot work and not feel connected. It would make no sense to me. I need the human connection, the complicity…..”
  8. No regrets. Asked “Do you ever regret your choices?”, she responds “No. This is my life. When you have dark moments, desire does return. Life surprises you all the time. I just wish for the best, open my arms and go for it.”

I recently read an interesting post about life lessons from Bon Jovi…….well, this makes a nice collection of life lessons from Juliette Binoche.

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Two of the types of tools which are mentioned when people talk about the idea of “Health 2.0” are social networks and wikis.
Social networking sites are springing up fast and they all allow people suffering from the same disease to connect with each other for information sharing, telling their stories, giving each other emotional support and passing on tips and techniques which they’ve found helpful.
Here are three to explore – first up there’s Daily Strength. This site has a strong focus on interpersonal support. It allows people to tell their stories and to be supported by others in communities which grow up around groups of people with shared diagnoses. Next up is Medix. This looks a very similar offering. Again the focus is on patient-generated content – the sharing of stories and experiences. The third site I’ve stumbled across is called Trusera. Again, it’s a site for sharing stories and connecting up with others who might have had similar problems to yourself. This third site seems more minimalist to me. I’m not sure if that’s because it offers less “tools” or if it’s just a simpler design. I wouldn’t know where to start if I were looking to connect with someone else who shared a similar illness to me, but then I remembered the “old” web2.0 addage – “it’s not OR, it’s AND”. One of the great things about the net is how you can grow connections in pretty much any direction you like. I reckon if I was looking for support I’d register with more than one of these services (they are all free), and I’d see which community was the best “fit” for me.

Now let’s look at three services of a different type. You know about wikipedia, huh? It’s the biggest online user-generated content encyclopaedia ever! It’s based on a very simple technology known as a wiki. Anyone can use this technology to create their own special interest information source and that’s really at the heart of sites which are seeking to place themselves as reliable, trustworthy sources of health information. The trouble with health information is that so much of it is NOT trustworthy. There are a lot of people out there trying to sell you stuff. As a health professional I tend to look for information through specialist medical libraries but these sites I’m about to describe are really not for people like me. They’re for people who have no specialist knowledge who want to understand better what’s happening to them. Well, almost! First up is wikidoc. Wikidoc describes itself as a “global medical textbook”. It looks like it is pitched at health professionals. However, if you look on the little menu at the top left of the welcome page you’ll find an interesting item called wikipatient. Click it and you here. This is like a huge collection of patient information leaflets. All the pages on this site are edited by doctors, so the information isn’t the kind of free for all you’ll find on the support pages. It’s about information really. In fact this section has a byline – “What Was My Doctor Talking About? Watch world experts explain procedures and treatments in language that you can understand”. Askdrwiki takes a slightly different approach. It styles itself as a place “where you can publish your review articles, clinical notes, pearls, and medical images on the site. Using a wiki anyone with a medical background can contribute or edit medical articles.” This is the same kind of direct pitch to doctors which wikidoc has. It doesn’t have the section which is so explicitly written for patients however. The third site I’d like to mention hasn’t quite gone live yet. It’s Medpedia. This doesn’t look so wiki-like. But the idea is very similar. ” Medpedia is the collaborative project to collect the best information about health, medicine and the body and make it freely available worldwide” The splash page gives you an idea of what the final site will look like and invites doctors to apply to become contributors and editors. They say they hope to launch at the end of 2008. Harvard, Stanford and Michigan Medical Schools are involved, as is UC Berkeley School of Public Health. The preview pages look more like a traditional medical textbook to me, but clearly they are an attractively designed wiki.

I think it’s great to see these resources springing up and although it could be argued that there are too many of them already, I don’t agree. I don’t use only once source for information. I don’t use only one search engine. I think both of these tools can work well together. I think I’d develop a strategy of checking out the information wikis to try and understand the disease/my body/what’s going on – clarify and understand better the diagnosis and the prognosis. And then I’d register with a couple of the social networks, find out what others have experienced and hook up with people who could understand what I was experiencing for support.

But, maybe you could tell me. I’d be really interested to hear from anyone who has used any of these resources and hear what was good or bad about them. Or maybe you’ve already got some experience of other sites you’d like to share? Do tell!

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Stanford university psychologist, Carol Dweck has published a book entitled “Mindset. The New Psychology of Success” (ISBN 978-0-345-47232-8). Guy Kawasaki posted about it, and wrote a commendation which is printed on the front page. And Stanford Magazine did an article about it last year.

She’s identified two “mindsets” in relation to how people approach challenges and effort.

When you enter a mindset, you enter a new world. In one world – the world of fixed traits – success is about proving you’re smart or talented. Validating yourself. In the other – the world of changing qualities – it’s about stretching yourself to learn something new. Developing yourself.

One point she made which struck me as surprising at first was that people with a fixed mindset often have had lots of praise. She makes the point that just telling your child they are clever, or wonderful, or whatever, sets up a belief system in them which can become fixed and she recommends instead praising children for their effort, for what they’ve learned. This is her key point really – that when you have a mindset about loving learning you can grow, but when you have a mindset where you think talents are fixed then you get stuck.

The fixed mindset limits achievement. It fills people’s minds with interfering thoughts, it makes effort disagreeable, and it leads to inferior learning strategies. What’s more, it makes other people into judges instead of allies. Whether we’re talking about Darwin or college students, important achievements require a clear focus, all-out effort, and a bottomless trunk full of strategies. Plus allies in learning. This is what the growth mindset gives people, and that’s why it helps their abilities grow and bear fruit.

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It’s funny how a document or an idea can float around for many years then re-emerge with new relevance much later. In reading about “Health 2.0” in the BMJ recently I followed the links to the Demos organisation and downloaded their excellent document “The Talking Cure“. One of the references listed in that document was a publication by the Royal Pharmaceutical Society of Great Britain, published back in 1997, tackling the issue of “non-compliance” – where patients don’t actually take their medicines as they’ve been prescribed. This is a fascinating document. The conclusion it reaches is that it’s time to stop thinking about “compliance” and start thinking about “concordance”.

Here’s their definition of “compliance” –

The patient presents with a significant medical problem for which there is a potentially helpful treatment. What the doctor or other health care professional brings to the situation – scientific evidence and technical expertise – is classed as the solution. What the patient brings – ‘health beliefs’ based on such qualities as culture, personality, family tradition and experience – is classed by clinicians as the impediment to the solution. The only sensible way out of this difficulty would appear to be to bring the patient’s response to the doctor’s diagnosis and proposed treatment, as far as possible into line with what medical science suggests.

and, here’s their definition of “concordance”

The clinical encounter is concerned with two sets of contrasted but equally cogent health beliefs – that of the patient and that of the doctor. The task of the patient is to convey her or his health beliefs to the doctor; and of the doctor, to enable this to happen. The task of the doctor or other prescriber is to convey his or her (professionally informed) health beliefs to the patient; and of the patient, to entertain these. The intention is to assist the patient to make as informed a choice as possible about the diagnosis and treatment, about benefit and risk and to take full part in a therapeutic alliance. Although reciprocal, this is an alliance in which the most important determinations are agreed to be those that are made by the patient.

This is such an important shift in thinking.

The full report considers what this means for “Evidence Based Medicine” (EBM). It does represent a challenge but it doesn’t undermine EBM principles. EBM is basically clinical epidemiology. It’s a statistical technique which focuses on the results of experiments conducted on groups of volunteers. It helps us to understand the potential of an intervention. However, the reality of an intervention has to be patient based. A painkiller might be “proven” in EBM terms, but might totally fail to relieve a particular patient’s pain. In fact, that’s partly the reason there are so many “proven” drugs which claim to do the same thing – they might have demonstrated their potential to something but only the patient can decide whether or not they “work” for them.

This is encouraging. For too long patients’ experiences have been dismissed as “anecdotal” and, frankly, irrelevant. That thinking has to change.

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There’s a revolution beginning in the practice of medicine. It’s about a shift in power which will change the way doctors work. It’s quite fascinating to see the early shoots appearing and it’s way too early to be able to say exactly how this is going to develop.

One of the change factors is what is being termed “Health 2.0”. This term is being used in different ways but it mainly refers to the use of social networking tools. This is one of them – a blog. Blogs allow anybody to publish anything of interest. Some blogs are just websites trying to sell something, and some are so highly personal that they are only of interest to readers who already know the blog author. But the most exciting blogs are those which allow sharing of experiences, views, information through tools like links, tags, comments, blogrolls and so on. Social networking sites like Facebook, Myspace, Bebo and so on are other ways of sharing experiences views and information. I could go on, but I won’t! There are more and more tools emerging all the time. What do they have in common? They are about sharing. They allow people to access the stories of others’ experiences.

What’s this got to do with health?

Well, the traditional doctor-patient relationship is based on a doctor as the expert who knows best and a patient who will passively accept the doctor’s recommendations, whether that be a prescription or an operation or whatever. The power sits with the doctor and the patient often feels intimidated or unheard. The new way is patient-centred, another term which means different things to different people, but which usually includes giving a higher prioirty to the patient’s issues and wishes.

There are two elements to this “Health 2.0” change – doctor-patient communication and patient-patient communication. The US Institute of Medicine’s report “Crossing the Quality Chasm” suggested that care be seen in future as less “event based” and more “relationship based”. It recommended that doctors and other members of health care teams be more accessible to patients and that care becomes an ongoing process rather than conceived of as something that only happens in “consultations” or “office visits” or “admissions”. An article about these changes was published in the BMJ last week. It highlighted the need to shift towards what it called “conversations”, giving one example of moving the patient record from being a doctor-held property to being a document co-created and shared between doctor and patient –

An example of this conversation is that created when general practitioners share records with their patients by posting them on the web. It is being pioneered by a group of English GPs in the patient access electronic records collaborative, using the EMIS information system for primary care. GPs will post up the patient records on a password protected site and patients and their GP will be able to access them.

This sharing of information is a major driver in the shift of power. Not only will personal information no longer be the sole preserve of the authorities (think also of Donald Berwick’s speech to the NHS where his first recommendation for improvement was this – “Put the patient at the absolute centre of your system of care—In its most authentic form, this rule feels very risky to both professionals and managers, especially at first. It means the active presence of patients, families, and communities in the design, management, assessment, and improvement of care. It means total transparency. It means that patients have their own medical records and that restricted visiting hours are eliminated. It means, “Nothing about me without me.”) but more and more information is being shared. The BMJ article, for example, highlights the development of the NHS Choices supersite http://www.nhs.uk and facilities like Healthspace and Medpedia as examples of the much wider publication of health related information.

The second element is collaboration and sharing between individuals. These new tools allow people with similar problems to not only share their experiences but also to discuss what they’ve personally found helpful or harmful.

Demos, a UK-based thinktank has recently published an excellent document entitled “The Talking Cure” which encourages people to think about these changes. In that document they state –

“If we are serious about engaging patients in their own care, we need to recognise that current structures of choice inhibit responsibility.” Choice “requires a genuine negotiation, a conversation between patient and doctor, and a shift in logic.”

and

Truly personalised healthcare allows patients to articulate their experiences, express their values, set their priorities, be aware of their options, exercise their preferences and be educated in managing their health. This means an end to paternalism

The Demos document very interestingly compares the mechanics and hairdressers as models of ways in which doctors work – yes, really!

Today, the typical motorist may have a rough idea of what is wrong with his or her car but leaves it to the mechanic to make an exact diagnosis, define a successful outcome, and prescribe the procedures needed. A visit to the hairdresser on the other hand begins with a conversation to elucidate what the client wants done (and whether it is practical) and may continue throughout the visit. At the end, the client assesses the outcome.

I find all this very exciting. It’s going to shift health care into collaborative relationships which focus on the needs, experiences and wishes of individual patients. This represents a huge challenge to the command and control, expert knows best, model of passive patients who are told what to do by others who claim to know better than the patient what will make their life better.

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