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May 6, 2007

Whose data is it anyway?

Trying to improve public services has never been easy – get the boulder to the top of the hill and damn me if it isn’t half way down again as fast as you can say ‘Tony Blair’. And to make matters worse public services remain largely immune to Web 2.0 and all that it offers in terms of peer-to-peer commentaries and real-time reputation building. Like a dowager duchess the NHS sails on serenely, ordering a survey here and a focus group there to find out what ‘they’ are thinking, and never reflecting on when the creative destruction of Web 2.0 might manifest itself in the quiet back water of health care.
In part this is because citizen-donated feedback on the scale that the web makes possible is an entirely new form of data and no one really knows what to do with it. Who is best placed to generate it? How should it be fed back? How should managers respond? Is it useful? In short Whose Data Is It Anyway?
So it’s great that the Cabinet Office has asked Tom Steinberg to review how the state can best use all this new citizen-donated data.Over the 2 years that we’ve been piloting, testing and running Patient Opinion we have learnt some answers to these questions and over the next few weeks we will be sharing these with you here on the blog.
Interlacing user feedback with managerial responses at scale is new. The classic ways to ‘consult’ – surveys, focus groups, user reps etc - have evolved because they are easy for hospitals and service providers to run. But by the same token they are hard for the public to use. Which is why you don’t hear many patients asking for more surveys, please!
Conversely posting to YouTube. Flicker and blogging is easy for the public but hard for hospitals to respond to. As a manager what, exactly, am I supposed to do when someone posts a picture of a dirty toilet on a ward that I am responsible for to Flickr? Make sure it is now clean obviously (though chances are that this will have already happened). But what then? Leave well alone? Post a comment? Post a picture of the clean toilet? Get on with something more concrete? (for more on this see our recent article in Society Guardian)
So between surveys by providers that are all about ‘You and Them’ and the ego-driven world of You Tube and blogs that tend to be all about ‘Me and Mine’ there is little dialogue. Clearly what we need are new platforms that are driven by ‘Us’, that convert the collective wisdom of the many to appropriately improved services. And that prevent the apparently inexorably slide into toxic ranting that purely citizen-driven sites like You Tube are prone to.
This is where I think Patient Opinion comes is – a platform that can take comments at scale, direct it to just the right manager, and foster useful conversations about what needs to be done. We don’t try and replace the freedom of YouTube but we do try and make the offerings from patients easier for managers and staff to hear and to respond to. So that hopefully we all get better services (link to posting with Trust response on it).
Of course we are not the only ones doing this kind of thing. Dipex has been running a condition-specific service a bit like this for years. And from this summer we’ll have NHS Choices – the new NHS wunder site that is meant to be all things to all patients.
What’s important about all this is recognising that this new class of citizen-donated data demands new responses and new infrastructure. If we are going to survive the 21st century then web-mediated tools that collectivise the wisdom of the many and turn it into appropriate action will be absolutely essential. Creating these tools so that they reflect civil society as well as the commercial imperatives of current individual-centred platforms like You Tube won’t happen by accident. The toxic slide to clips of teachers with pornographic voice-overs that has already happened on Youtube will probably soon be replicated for nurses and health workers. But that does not have to be the end of the story. Create the right platform and conversations become easier not harder. Get the right people involved and services improve as a direct result of patients’ insights.

Posted by Paul at May 6, 2007 8:03 AM