Thursday, 7 November 2013

Transforming patient experience, WITH patients

I had the privilege of speaking yesterday at the King's Fund Transforming Patient Experience conference. The opportunity to speak about the role that patients can play in improving this has made me think more deeply about both what we can bring to the improvement process as patients, and what some of the challenges are. This post is a summary of the topics I covered in my talk. An abridged video of my talk is available here, thanks to the King's Fund.
Before we start to talk about the specifics of improving patient experience, it is really important to ensure that we all on the same page about what that means. Suzanne Shale has written an excellent article on the three layers of patient experience, Patient Experience as an indicator of clinical quality in emergency care. Whilst the biological dysfunction and consumer satisfaction with a provider (cue Friends and Family Test) are important, it is the phenomenological approach which is my focus here - "the totality of living with health, illness and treatment". 

Everyone is familiar with the statistics about how few hours patients spend on average each year with healthcare professionals. So why when we talk about patient experience, why do we focus so much on that 0.001% of the time?! Patient experience is often focused on clinical pathways that look like this...

We are very familiar with the above. But I wonder how familiar we are with the actual pathways that patients tread? What does that pathway look like for them, including the wilderness they find themselves in 99.99% of the time? In my opinion, it resembles something like this....

Swamps, mountains, storms, unfriendly terrain and weather, that you can't go round, over or under... You have no option but to go through it. Although the patient journey is not fun like a bear hunt!

Stepping up a level from the footprint of the pathway, I want to think about the journey that that pathway represents with patients. Emotions don't fit on the 2D pathways above, but if we are talking about the phenomenological approach, that is an integral part of it all! 

And these emotions and this journey don't just start at that first interaction with the service. It starts with the expectations and pre-conceptions people have about a service and the fears people have about their care or the service. The emotions aren't just related to specific interactions or transactions, but the journey as a whole that this patient may be embarking on for the rest of their life. 

So if we want better patients pathways, those pathways would help patients through the swamps and storms, and all the associated emotions. How can we design something like that without the intrepid explorers themselves?!

But this involvement doesn't mean just focus groups and surveys. Whilst they are valuable tools, they should not be the only way this transformation should happen. As I have mentioned in a previous post, people with long term health conditions have an enormous wealth of knowledge. It may not be formally recognised through an acknowledged educational system with registered qualifications, but qualifications from the University of Life that patients have are no less valid when we are talking about health and illness. 

So with this wealth of experience, are we making the most of it by getting everyone to fill out a survey, or by just 'capturing my experience'? Surely there are ways that we can involve patients that make the most of this knowledge? I believe that with patient leaders, and by treating involvement as a process not just a discrete activity, we can make the most of that experience and improve care. By just 'listening' to patients, we aren't doing justice to their knowledge, and are missing out on the contributions they could make at many other levels to our healthcare system. 

Instead of talking about the 15 million patients who live with long term health conditions, 15 million problems to be solved, let's talk about the 15 million insight that are out there, the 15 million passions, the 15 million skills... and do credit to that by doing more than surveys and feedback, but by working productively with those potential partners you could have in improving care. 


  1. Dear Anya Thank you for your illuminating thoughts. I much look forward to watching the video. I agree with you that there is a rich untapped resource. As a GP for 30 years I have learnt so much from my patients and/or their carers - how they have coped with, endured and transcended their illness and suffering. I have also learnt much from my own illnesses and that of my children. Snapshot surveys and algorithms cannot capture the patient's lived experience - narratives give a much richer account. But what is lacking in much of this is dialogue and iteration whereby clinicians and patients co-create healing stories that give hope and meaning. But this demands humility, generosity and authenticity from both parties. It means taking risks and exposing vulnerability. Are managers and clinicians willing to to this? I wonder whether we are witnessing the hubristic or fear-driven attempts to control the messy, ineffable aspects of living and dying? Systematising and categorising illness and suffering into predictable, discrete, logical 'episodes' or transactions that can be 'managed' gives the illusion of certainty. You are quite right to include the emotions - but it is not just that of patients that is important here. You have probably read these but I do recommend Arthur Frank's The Renewal of Generosity. Illness, Medicine and how toLlive, as well as The Wounded Storyteller. Also Annemarie Mol's the Logic of Care and Howard Brody's Stories of Sickness. On a lighter note I wrote a blog available on the HVHF website re why we need compassion in healthcare as I was fed up with the publicity re an article on why it is not needed. I also give a link to a more nuanced academic article I wrote on the topic.
    With very best wishes and looking forward to more conversations!
    Paquita (de Zulueta). Sorry could not comment other than anonymous as could not find url that worked!

    1. Dear Paquita,
      Thank you so much for your comment with such helpful reading recommendations! I love the idea of co-creating healing stories, and look forward to our future conversations!