Teaching the rx narrative: story as medicine

Patients come to a doctor with a story of their illness and it is important that they allow that story to be told. Listening with the patient and building on the story together allows the doctor a greater understanding of the illness. Technology can then be used to confirm an initial idea. Traditional ‘case history’ stifles the patient’s narrative and ability to tell their own story and will not elicit as much information as if the patient can talk freely.

Patients whose doctors express empathy and employ active listening techniques are more likely to return for further appointments and to finish their treatment successfully. However, a demanding work environment, little importance being placed on empathy and insufficient training and education, mean that doctors have been keeping patients at a distance.

By providing healthcare professionals with the time and tools they need to allow patients to express their story, the outcomes of diagnosis and treatment are much better. The focus needs to shift from seeing and diagnosing patients quickly, to joining a patient on their journey.

Open sourcing

Open sourcing is about learning from each other, collaborating and doing things for yourself. Rather than waiting for a product to be designed and sold that solves a problem you have, the open source market actively encourages people to use each others designs and knowledge to create a solution themselves. By combining the knowledge of various people with one’s own knowledge, a project can become virtually limitless. Idea formation and product creation is not restricted due to the internet, meaning that collaboration can happen across the world.

The principles behind open sourcing can be extremely beneficial in the healthcare sector. Not only can products be created that will help patients and staff, the attitude towards knowledge is important. Rather than trying to keep good ideas a secret, open sourcing requires knowledge to be made public. This makes knowledge open to anyone who may be able to help with a solution, whether they work within the sector or not and therefore a wider range of people who can help to find solutions to problems.

TEDTalks playlist

If you are planning an innovation event the creativity playlist would make people think differently and stimulate new ways of working. There are so many ways that this could be used – playing in the background at the event, as part of a workshop or use as a separate piece of follow up learning. The beauty of a playlist is that there will always be a talk which will appeal to your audience or encourage debate. TEDTalks have picked the top five popular talks on creativity, which are diverse and challenge you to think outside the box. What these presenters will do is leave you with an opinion on their particular take on creativity!

We have seen through the #EdgeTalks how our community has engaged with specific topics from change platforms to co-production. Our aim is to bring you even more diversity through the community platform in 2015 – 2016.

Enjoy the talks from Elizabeth Gilbert, David Kelly, Kirby Ferguson, Young – Ha Kim and Phil Hansen, share them with your health and care community and leave a comment to let us know which talk resonated with you. Change is changing and it’s time to look at new ways to kick start creativity in teams.

Creativity – a process not an event

A good friend of mine is fond of reminding me that meetings are not outcomes. How hard it is to avoid being distracted – or, even worse, satisfied – by the process of change rather than focusing on meaningful outcomes. This article by James Clear, takes a different perspective: neither process nor outcome is the be-all and end-all. Creativity allows us to express ourselves, even if only to ourselves.

Clear argues that setting ourselves challenges within very demanding constraints propels us into a creative mode that is more free, less process-driven, than Dweck’s ‘growth mind-set’. Working within a small space, be it conceptual or environmental, makes us resourceful, according to Clear. And the discipline of doing it, regularly, repeatedly, broadens our knowledge.

Besides self-imposed constraints and consistent effort, Clear offers a couple more strategies to develop creative thinking. Sleep and sunshine both have proven benefits which are easy to understand. On a recent trip to a botanical centre, my wife pointed out it was the first time I’d seen so much natural green in weeks. Putting the pixels away is good for the eyes; feeling soft grass under your feet is good for the soul, too. And then it doesn’t matter what outcome you’ve been struggling for or what process you thought was holding you up, your creativity will lead you both to different methods and unexpected results.


What if the best way to be innovative is not to try?

James Whitehead @james_whitehead

The standout line for me in this provocative blog post by Oxfam’s Global Innovation Advisor is “if I ask my colleagues to identify work that is innovative I will often be met with a blank look. If I ask where our work is exciting and has potential to make a massive difference for people, that’s when the lights come on and the conversation gets interesting.”

Although James’ work is in international development, so much of it resonates with health and care. He bemoans the lack of ingenuity in trying to tackle domestic violence by putting a poster in a health centre. He highlights that most innovation starts by recognising, nurturing and retaining talent; and then encourage teams to take risks and defend them when things get difficult or don’t deliver.

James’ main point, based on a recent research paper he has written, is that people doing real innovation often don’t see themselves as such and the word itself isn’t particularly useful.

Why organisations need gardeners not mechanics?


If you are in charge of making change happen in your organisation and you are frustrated with the constant reference to mechanical, programmatic, Ford approaches that reduce the spirit of change to objects then this article would interest you. I like gardening but I often get frustrated with how long it takes to move from seeding to seeing the end result. Gardeners more experienced than me invest time in selecting and growing the best products, often experiment as well as have a clear idea about the picture they want to see develop. Gary argues that change takes time particularly behavioural change which is the secret to successful change. Technical change solutions that are not connected to behavioural change and the wider ecosystem tend to fail. Why? According to Gary Lloyd organisations are interconnected and interdependent like an ecosystem. New drivers of change have altered the landscape such as digital technology which has made organisations transparent. Individuals are not machines and their commitment needs to be earned. Do you think change should take time and be more people centred or do you think in this rapid turbulent change era we need to juxtapose between this and more traditional forms of change? Interested to hear what your garden looks like?

Janet Wildman


The Director who cried in the toilet

Carol is a patient leader based in Northern Ireland.  She has chronic kidney disease, received a kidney transplant in 1987, and has also been diagnosed with Wilson’s disease and three inflammatory conditions. She sits on the Board of Directors of the Northern Ireland Rare Disease Partnership (NIRDP)

David Gilbert’s blog ‘How Real Can You Be’ encapsulates the ‘emotional labour’ of being a patient leader and poses some fundamental questions:

How can patient leaders remain true to themselves, other patients, their aspirations and the reasons that led to the desire to make a difference? 

Can we be real or do we need to fall into step when situations prevent it?  

What lies beneath the façade of trying to remain positive, and appear positive, at those times when patient leaders do not feel positive?  

 How do we handle the frustration and disappointment when we encounter tokenistic gestures? 

Do we hide reality away in a virtual filing cabinet along with our emotions and vulnerability because we do not want to damage relationships?

The hope that someday we can be the change we want to be by clinging onto the life in the filing cabinet. Disclosing only small chapters of our experience that we believe are safe to reveal.

Resilience is much more than appearing tough on the surface. There are good times but there are also the bad; and few will see the true emotional impact of the ‘bad’ because we shall be crying in the toilet or wherever we chose to cry.  It will be somewhere out of sight.

David’s blog is an excellent reminder of patient vulnerability; that we need to avoid facades, that we should not be crying in the toilet, and patient leaders must stay true to their roots not only survive but to make a difference.

The power of empathy within organisational change

By Zoe Scaman @LibertineWomen

The article is written from the perspective of change consultants Undercurrent, who share their strategies for working with the resistance their role inevitably, evokes.

They identify common causes for this resistance including comfort with the status quo and the fear of reduced status and autonomy heralded by collaborative rather than hierarchical relationships.

Undercurrent advocate empathy as a response to resistance, beginning with senior leaders who think they have the most to lose and defining empathy as ”the ability to understand and share the feelings of others”. This is a challenging approach for systems that privilege performance and urgency as drivers for change, with limited time, value or energy left for the slower, relational capability that empathy requires.


Author Allison Trimble, @allisontrimble1

Allison is Senior Leadership Consultant at the King’s Fund brokering collaborative relationships between health care professionals, patients and communities.

Holding a position of power does not make you a leader

This is a thought-provoking hard hitting article basically reinforcing the view with which I agree, that the title “leader” is not something that comes automatically with positional power but is about actions based on values and example.

I sense that the author Joel Peterson who graduated from business school in the 1970s has experienced the best and the worst of “leaders” – the latter being comprised of narcissists, bullies and power players whom he places in a box marked “jerk”. He rightly points out that many of the best leaders have no position in the official hierarchy at all such as community and faith leaders whom he describes as being characterised by the level with which they genuinely care about their “followers” and their capacity for honesty.

This is certainly my experience as a “patient leader” working for a long time with no real legitimacy in the system. I had to form my own notion of leadership to take into account that I had no real power or authority within the system and as such my “leadership” would have to be defined by how I conducted myself and by always bearing in mind the words of Lao Tzu “A leader is best when people barely know he exists, when his work is done, his aim fulfilled, they will say: we did it ourselves.



A patient is inducted in the healthcare hall of fame

Few things have disrupted the status quo more than the internet and social media in particular.

As a long term patient whose long term condition carried with it consequences of isolation and deprivation from participation in society it has been life changing.

Social media has contributed hugely to this through the contact it enables me to have with others with both professional and lived expertise and insight. It has been at times a source of support in the absence of services able to respond to me when in crisis. It has also given me a platform from which to be heard and allowed me to break through boundaries usually preventing someone with no legitimacy in the official hierarchy from being admitted to “professional” conversations.

There is a growing community of patient change agents out there using the internet as a tool. These E-patients are described by the late Tom Ferguson founder of the e-Patients Scholars Working Group as “empowered, engaged, equipped and enabled”, a far cry from the passive recipient of old. E-patient Dave is a leading example. David DeBronkart is a cancer survivor and other of the book “Let Patients Help”. In this article written on the occasion of his admittance to the Healthcare Internet Hall of Fame, he describes the extent to which the internet has transformed healthcare providing a useful timeline and links to sources of further reading.

To those still resistant to the change in patient/professional dynamics this indicates the genie is clearly out of the bottle so why not join in?

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