I’m out of my box! #box10

I have an awful habit of needing to blog almost immediately after an event – sort of stops me putting it onto the to do list (never likely to see the light of day again), forgetting things that in the cold light of day mellow and feel less significant and on this occasion it also has the benefit of not letting me fall asleep after my pint with @chibbie @markhawker @alissproject and @couragemary …having just made my train I have no intention of snoozing off and waking up in Penzance!

So this post will contain my raw, unconsidered and unreflected thoughts – I promise I’ll return and blog more in the next couple days, but for now here goes.

Today I had the privilege of attending Out of the Box @patientopinion conference looking at how patients, service users and carers are using the web to change their lives and their services; you can see more about what was covered in the timetable below.

This is not my first conference hosted by Patient Opinion, I had a great time at #mps09 my public services conference last year – it won’t be my last either, as I’m looking forward to the NESTA and Patient Opinion event next week A Better Old Age: how the web will be part of caring for older people. However after that I am going to make myself think long and hard before signing up to another conference, not because they’re not brilliant – they are, but I feel like I should do as my mum would expect and let someone else have a go! This is my first reflection point really, and one I know that I’m not alone with – I feel like I’ve got enough information and now it’s my challenge to go away and instigate some changes off the back of it…as much as I love being there, and I always learn lots, I’m sure other people would have learnt more from attending today.

My second observation is around participation. Patient Opinion run their conferences on a gift economy – the underlying costs are covered by them, but essentially the speakers give the gift of their words, delegates give the gift of refreshments and baking, others of us try to share the goings on with a wider audience through ramblings like this, or tweets on the day. There is something about the gift economy, actually there’s a lot to it, but for me it’s the subtle difference between attending something and just passively absorbing versus attending, contributing and feeling a bit of buy in to the success of the day. There’s definitely something in the gift economy approach…and it’s not just cake!

Another thing that has hit me on both occasions I’ve attended Patient Opinion events now is how warm and friendly their staff are. There is something about being welcomed, genuinely welcomed by people who *genuinely*care (or do a good show of pretending they care), I don’t think I’ve ever seen people lurking in corners doing that awkward I-don’t-know-anyone at conference pose, I’m not sure if it’s carefully planned, genuine personalities or just luck of the atmosphere but a friendlier conference you’d struggle to find.

I’ve also been reflecting on the challenge at any of these events of trying to reach your audience, wherever they are at – physically and intellectually! So people might be in the building participating or they might be virtually participating; all of these people might know nothing or might be experts in your topic. The format of today’s event – plenary, workshops, soapbox and speed-dating marketplace meant that there was something for everyone. I was a particular fan of the soapbox sessions although it did mean there wasn’t too much chance for informal chat over coffee – but there was lots of time at lunch so that was ok. I was obviously there so can’t comment on how well it worked virtually but this is something I’d love to explore in terms of how we can make the most of attendance for non-attendees, something I was interested in before even arriving this morning!

So content, what about the content. I don’t want to mention particular speakers or highlights in terms of presentations in this post, with the exception of Ann McPherson who spoke in the first plenary. In my opinion Ann was fabulous, her very candid sharing of her experience left me wanting to know more. She is obviously very passionate and personally and professionally tied to what she does, she is the Director of Health Experiences Research Group; and has also had breast cancer and is living with pancreatic cancer. Ann was always going to light my fire as she talked research methods and analysis, not just anecdote; she also made a call for realistic, normal stories and patient experiences – not just the tragic or the heroic. You can see more of the work Ann was talking about, and the resulting stories on www.healthtalkonline.org and www.youthhealthtalk.org

Throughout the rest of the day there were three things that emerged for me – three recurrent themes and questions.

1. Story…stories are everywhere; we all know that they’re a good idea, we know they’re the secret to winning hearts and minds and that without them we can kiss goodbye to any real behavior change. Let’s take that as a given. What I desperately wanted to know, and the nut I failed to crack today but hope to muse over further in the next few months, was how do we use stories and, most importantly, how do we know they’re effective in making changes? This is really a question of how do we apply them to instigate change, not why should we use them, or whether they are valid. Speaking with James from Patient Opinion at lunchtime he has a good argument, and some great examples, for how their work is making change – but it needs to be genuinely embedded throughout services and I believe that we’re in danger of seeking out a magic fairy story wand here and hoping if we wave it the change will follow once people understand why it is important. I need more reassurance and I need evidence, preferably including cost-benefits work, to be able to really defend the use of stories as a tool for change. I’m not sure I made this point clear enough when discussing it earlier and I’m not sure I’ve made it clearly enough here but this will definitely be something I return to once everything has settled in my mind a little more.

2) Who are we there for? The conference sought to look at the experience of patients and carers and also included perspectives from staff and people who provide support and are interested in doing that better. These are all very different groups of people – although of course they’re not mutually exclusive. I was quite struck today at the different approaches required for each of these groups, something that has not necessarily hit home as obviously for me on previous occasions.

3) So what? No really, so what? Patient Opinion have done a brilliant job in pulling this off, big shout out to Jonty who did a lot of the work, we’ve all had a nice day…but what will change? This is really a question – definitely not something I have a crystal clear answer to just yet. The day ended with each of us writing a promise to ourselves that will land back on our doormats in a month or so and hold us to account. There are conversations happening about moving this on; to some extent I was a little frustrated at myself today – I am the converted here, I buy it, I really do – preaching to the converted isn’t going to get us anywhere, so if anyone else is interested in joining a conversation about what we do about this then please shout. I will make sure I move this on…somehow!

I had a really fabulous day. Massive thank you to @patientopinion and @jauntyhall for all their work – I suspect few people really understand what goes into organising something like that, with the possible exception of @laurenivory 😉 I also had the opportunity to meet lots of people in real life, some for the first time and really hope that between us we can go out there, back into the real world and change things. Consider this a very unreflective, unconsidered call to arms!

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8 thoughts on “I’m out of my box! #box10

  1. I didn’t know about #box10 before today so it is great that you have taken the time and effort to feedback so quickly. My real interest is how to use patient stories to best advantage in medical education… how can we make sure that professionals realise their importance, and keep listening, from the get-go?

    Your point about the different needs of groups is an excellent point as well. All is challenge!

  2. Hi George,
    Thanks so much for the kind compliments, you’re making us blush! Big thanks also for your ever present (and always much appreciated) support at our big events, and for joining (and actually leading) the gang of us who were getting the word out on twitter. Like you, we’re not sure how successfully we managed that, it’s always a little like whispering in a crowded trafalgar square but tweetreach reckons we reached out to over 10,500 people which can’t be bad.

    Running #mps and #box10 as gift economies has certainly proved to be a winner. Of course, it relies on generousity and we feel very lucky that people are always so up for it and so giving. We agree with you, it brings everyone in and means we all play a part in making the day happen. It’s great for us as organisers to have contributions and support from so many people but also exactly what I’d want as an attendee. I think everyone feels a real sense of involvement and pride as they watch people scoff their ‘battered on the train journey but made with love’ cakes!

    Just on a last note from me, you’re right in saying that while we are story-converts, we all want to see some concrete evidence that they’re really a tool for change. We have examples from all over the country of where a single person sharing their story, however insignificant they think it is, has a real impact on their local health services. It might only be something small that’s improved, but it’s improved however you look at it. We will be making more of a big deal of these on the site in the next few months so watch this space. There’s still a long way to go but as a team, we’re absolutely convinced that in health services at least, there’s a slow but tangiable shift towards listening to qualitative accounts of people’s experiences and away from data, data, data.

    But we know that it takes more than that. People’s stories have to get to just the right person – the one who might listen because they have to but will get up off their seats to make a change because they want to. Without doubt, it’s technology that enables us to carry people’s stories to just those people. We, and by we I mean Patient Opinion and all of our supporters, have the task of inspiring those people to believe that trusting your users to co-create your services is the best move you’ll ever make.

    We had a really fabulous day too George, thanks for the reflections and for your unfaultering support.

    Amy, Patient Opinion

    p.s. Hoping this doesn’t reach you in Penzance!

  3. Interesting stuff!

    What interests me is the experience of the patient in providing stories. What do they get out of it? How do they feel about it? What are their expectations?

    Was there any discussion of things like that?

    Cheers,

    Mark

    1. Carer not patient. I have lots of stories/knowledge/experience. I get out of it the hope that I can drive up standards/practice and prevent others going through some of the dire situations my Mum and I have endured. How do I feel? horror, sadness, disbelief,annoyance but if I can drive up standards, I want to. What are my expectations? If I don’t speak up and fight – who will? I am happy to do it but many others aren’t or don’t have the time or skills. I have passion. I care. I want to make a difference – make things better for my Mum & for me because I’m what we are talking about and I want better for me.

  4. Hi George
    Thanks so much for being there, and for such a quick and positive and thought-provoking post. There’s a lot here to reflect on and discuss, but there are just two brief things coming to mind right now:
    a) yes, the Patient Opinion team really are like that! We are blessed with some of the most friendly, warm, energetic and committed people you are likely to meet. Without them, there would be no Patient Opinion.
    b) Conferences can be about a lot of things – and immediate action, or a tangible change in behaviour, are only two. A conference might just be a chance to meet new people or old friends, to hear a new idea, to be supported and strengthened in what you do, or to build a new community. The most interesting things will happen after conferences, or between conferences – new connections will be made, then grow into friendships or plans or working projects. It’s already happening to me post-#box10! Emails, plans, ideas taking shape – we can’t say what the effects will be, or when they will be – after all it’s just a pebble thrown into an infinite pond. But a ripple always follows.
    Got a bit carried away there 🙂
    James, Patient Opinion

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