Who wants to be a story millionaire? Some thoughts on the value of Patient Opinion

So, narrative capital. The social scientist has it like this…

… the power [research participants] have to tell the stories of their lives. This ‘narrative capital’ is then located in the ‘field’ of social science research and Sen’s capability approach is introduced to prompt the question: What real opportunities do research participants have to tell the stories they value and have reason to value? It is argued that ‘narrative capital’ can be too easily squandered by the failure to recognise individual values. –Research Abstract, Michael Watts

… and the novelist like this…

What the writer accrues by setting up situations, tensions, threats and other build-ups. If the author decides on a shocking climax that blows everything wide open, they will be spending the Narrative Capital they’ve saved – having the warring couple suddenly acknowledge their love, for instance. The more capital saved, the better the climax – but you can’t spend the same capital twice, and if you try to have a climax bigger than your capital can buy, the audience feels robbed. – author Kit Whitfield’s lexicon

I invoked the idea of narrative capital on this blog when I wrote about the wanton destruction of Leeds’ historic Clarence Dock: You wouldn’t burn a book, so why destroy a place with so many stories?

And last week at our first ever Service Design Thinks in Leeds I was struck once again by the power of stories, thanks to James Munro of 4IP and Screen Yorkshire-supported Patient Opinion.

Patient Opinion is a simple idea: you can write your account of being a patient in the UK’s National Health Service, read other people’s experiences and, crucially, see what NHS staff and managers are doing to make things better.

Making things better is at the core of the service: it’s founded on the insight that the NHS is well-equipped to deal with adversarial “complaints” demanding specific redress, but less so for “feedback” – negative and positive comments freely given by people who simply want to help improve the service for future patients, some with very specific suggestions, others just to say thank you.

With the help of this social enterprise, health service managers and practitioners can hear their patients’ authentic and surprising voices more clearly, and deliver better care as a result.

And at the centre of their operating model are stories. Lots of stories. Stories that have value, donated like blood:

100,000 stories per year. After 10 years, you could be a story millionaire!

It would be tempting to throw the Patient Opinion corpus into some kind of massive algorithmic natural language grinder, to present yummy infographics and Chernoff faces showing the relative happiness of different institutions, like Patient Opinion’s 4IP stablemate Schooloscope.

But that would miss the point. Yes, the Patient Opinion stories are cumulatively impressive – 25,017 and counting – but, as James explained, their power is in their uniqueness. Each story is different, nonfungible. Each narrative is differently shaped and demands a personal response from specific people.

Story, narrative capital, content, call it what you will. The value is not in the words themselves, but in the minds and actions of the “audience”: the right people in the right place hearing the right stuff at the right time, and doing something about it.

You can watch James Munro’s talk on the SD Leeds Vimeo channel.

8 thoughts on “Who wants to be a story millionaire? Some thoughts on the value of Patient Opinion

  1. I too was very struck by the Patient Opinion story. It is is fascinating to read the individual stories of NHS experience in Leeds. http://www.patientopinion.org.uk/opinions?frompopulation=00DA
    Each is a highly personal story. And each response to the story starts with exactly the same line:
    Thank you for taking the time to share your recent experience on Patient Opinion…

    There is then a pretty formulaic structure that acknowledges the story and confirms that the information will be conveyed to the relevant authority.

    Deeply personal stories of emotion, pain and gratitude responded to in a formulaic way.

    And so far I have seen no evidence of loops being closed. No stories of actions that have been taken in order to learn or change. But perhaps that is the next stage of service design?

    1. Thanks Mike, I guess your criticism is directed at the responses for NHS Leeds not Patient Opinion as a whole. I read a few of the Leeds responses and can see what you mean, but it seems a little unfair. Having been responsible for responding to customer feedback in a couple of roles, I know how hard it is to get the balance right. One wants to say the right thing, yet the right thing said over and over becomes formulaic, the wrong thing. Often it takes time to make changes, and it’s easy for the link back to the original suggestion to get lost in that time. No doubt more can be done, but acknowledging and passing on to the right person is an essential first step.

  2. It’s a very difficult thing to get right.

    I think Patient Opinion, and what we hope to do with Mypolice is to start something. Getting good responses, and ‘closed feedback loops’ for us is the ultimate goal but sometimes these are difficult to get and certain bodies/orgs/institutions will give standard copy paste replies because they know they should be responding and be seen to be ‘listening’ but I guess are perhaps missing the point.

    For service designers…and other closely related disciplines and people operating in the innovation/design field, my big question is where do we come in? Typically, designers have been contracted from the outside, deliver work, and leave. The delivery stage is as far as we get, leaving a blueprint, or a journey map, or working on an implementation plan, our role has not been ‘makers’ we’ve been more ‘consultants’

    Perhaps though, in work I’ve seen recently and some had the pleasure of being a part of, the designer’s role has changed to supporting people to act on these amazing and powerful stories by empowering staff inside organisations to innovatively tackle solutions by equipping them with design skills and tools to make sense of issues. In other work, designers and entrepreneurs taking it upon themselves to innovate from the outside in, by setting up their own initiatives and approaching organisations (although we still havea huge way to go on this to make this successful, a bunch of small companies approaching say big public sector clients is not the easiest, the sector would rather invest in large, expensive, companies for solutions as they are ‘fail safe’.

    I view Patient Opinion as a fantastic beginning, a rich sample of empathic information with are qualitative and detailed to depict what problems there may be that can then be acted on. Some small things that can be tweaked in a day, and some larger more systematic issues that perhaps need more thought, maybe that’s where designers would come in.

    Looks like SD Leeds is going well anyway, must get Scotland’s next meet up underway!

    1. Hi Sarah, Thanks for leaving such a thoughtful and insightful comment. I like the idea of innovation “outside in” using the inspiration and ammunition provided by the stories on Patient Opinion and Mypolice.

      I think we need to distinguish two levels of service design. First there’s design of the conversation space for people to tell their stories and engage with service providers – this has value in itself. Second, as you say, there’s the focus of service designers on the specific issues that arise in that conversation space. I’ve often seen designers tasked on only one of those levels straining to get onto the other!

      Obviously the outputs of the two may look very different – a better webpage or a new toilet seat? – but I suspect there must be some special dividend to be gained when the same service designer is involved on both levels.

  3. Yes, exactly.

    I’ve kind of always viewed feedback sites as the tip of the iceberg within a design process. They are the first insight, or ‘problem’ that needs addressed and then sparks a whole new project ‘type thing’. They are, I guess, likened to the discovery stage.

    That’s why I’m a fan of patient opinion. Because even if they don’t always close the feedback loop, and in alot of cases they do, it’s still a useful insight for them (they could call in a local design firm to approach an NHS outpost with an offering) or they can produce data which highlights more consistent issues to the NHS.

    I think there is alot to be said for excited designers (and entrepreneurs/coders/innovators), ‘wanting to do something good’, in different cities around the UK who could work on a small budget, in an agile fashion and help to fix some of these problems that are being highlighted.

    Anyway I’m going off track! Thanks for the video.

  4. Hey Matt
    Thanks for a really thought-provoking post – and for provoking some really interesting discussion too.
    I’m struck by Mike’s comment (1st one) about how responses can sometimes become formulaic – and as you say, that’s hard to avoid after some time.
    But it varies a lot from person to person, and some NHS staff seem able to respond with real empathy and insight and care, even online. I think a lot of it is about confidence.
    Our aim is not simply to collect stories, though even that I think has great value (and I love the Chernoff faces idea!). As you know, we want to see how these shared experiences can help make services better – and even perhaps help health care staff to *feel* differently about their work.
    In some places, we’re seeing that start to happen – see for example stories about continence nursing in Rotherham, or adult mental health care in Warrington (5 Boroughs trust). And now we have our “We’ve made a change” post-it notes on responses, we hope to create new incentives through the site to show how services are changing.
    We clearly have a long way to go still, and much to learn. That’s why it’s so interesting!

    1. Thanks for commenting James, and thanks once again for a great presentation last week to kick off Service Design Thinks in Leeds. I know many of us were inspired by your work. I like the “We’ve made a change” post-its. I guess the next step in the closed loop after that is the comment from a subsequent patient saying “You made a change and I benefited!”

  5. Thanks for commenting James, and thanks once again for a great presentation last week to kick off Service Design Thinks in Leeds. I know many of us were inspired by your work. I like the “We’ve made a change” post-its. I guess the next step in the closed loop after that is the comment from a subsequent patient saying “You made a change and I benefited!”

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