The idea of rebooting healthcare has instant appeal. Switch off, wipe clean, re-start – nothing could be easier! Why didn’t we think of that before? But for anyone who has struggled to change the intractably complicated world of healthcare, the metaphor of a reboot could sound a tad simplistic. After all, human systems and organisations are constructed and mediated through relationships, not code.
But even if relationships themselves aren’t susceptible to a quick reboot, their nature is clearly being transformed by code. If Web 1.0 already cut the cost of finding information by an order of magnitude or more, then email, Facebook, Twitter and all the other panoply of Web 2.0 are creating new ways for us to communicate at trivially low cost. That these web-mediated social networks are new and disruptive is clear – just ask the music, travel or retail industries. In this sense we are indeed in the midst of a profound ‘rebooting’ of how citizens relate to each other and to public services.
It certainly can feel like a new world if you are a manager in the health service. Gone are all those nice comforting iron cages of bureaucratic rationality that you grew up with in the last century. Now it’s like the Wild West out there as people blog about you or show everyone the state of your toilets.
This democratisation of voice is entirely new. In the old world of the 20th century only the elites had easy access to a public voice. Now anyone can blog or post a video to YouTube. With the cost of an online voice close to zero, new conversations and new relationships emerge all the time.
Cut the cost of anything and you’ll create a glut – and democratised voice is no exception. Give everyone a public voice and all too often those who shout loudest stand at an advantage. But actually most people don’t want to shout – they want a conversation that works for them. So the trick is to turn away from one-sided sites where citizens abuse staff and instead use the tools of the web to ensure that your comment has an effect.
On Patient Opinion we use RSS technology to try to ensure that postings about, say, self-harm in Wigan can be directed to the relevant manager at the hospital, as well as the PCT commissioner responsible, MIND and other relevant national groups. These technologies can give busy managers the highly selective hearing they need to order up just the stories that are relevant to their responsibilities – and no more. With the right platform it becomes very cheap to turn a babble of disconnected web-voices into hundreds of useful conversations.
That said, it is now clear that you can give managers RSS feeds tweaked to just their needs but you can’t make them use them. All those real live people wanting to have a conversation seem scary. No invisible hand here, just all too warm flesh and blood. So turning cheap voice into useful conversations means treating both sides – patients and staff – fairly. The open blogosphere is too raw and one-sided to be of much use. Previewing all postings before publication, and removing names from negative comments help busy staff who are struggling to find their way in this brave new world.
Sometimes responses remain absent or grossly formulaic but slowly we are all learning how to use these new tools to deliver better services. But it’s not just voice that has become cheap. The cost of finding ‘people like me’ has also fallen making it trivially easy to find others with the same passions or to sustain coalitions.
Such developments may not be entirely benign. ‘Shroud wavers on speed’ motivated by their personally urgent concerns could undermine the solidarity at the heart of the NHS. The trick as always is to use the new economics of the web to do the things that we all want. Users of Patient Opinion can agree to us contacting them about developments in their local health service. Since their stories are tagged by the service they used and the nature of their concerns, it has become cheap to identify people who are ‘thoughtfully passionate’ about local services.
These people were previously very difficult (i.e. too expensive) to find. Now that the unit cost of finding them has declined it turns out that – at least on Patient Opinion – they are quite happy to help, with 30-40 per cent agreeing to contribute their thoughts via email or telephone interviews.
All this opens up the possibility of what has been called ‘sous-veillance’ – the upward gaze of thousands of citizens empowered by cheap voice to match the powerful downward surveillance information that organisations have long used to assess compliance and control.
‘Sous-veillance’ and ‘shroud wavers on speed’ sound like bad news at least for managers, but the same technologies can be developed in much more positive ways. For example, if the NHS saw ‘sous-veillance’ as a way to create ‘open source hygiene’ the outcome could be very different. After all, the people with the most intense interest in hospital cleanliness – patients – currently have no means to contribute to the cleanliness of their surroundings. Why not recruit the 100,000 highly motivated patients sitting in NHS beds everyday to the cause of great hygiene? To adapt a favourite phrase from open source software – given enough eyeballs, all superbugs could be dead.
Taken together these economic changes mean two big things for health services. First, there is going to be a significant increase in the power of voice. If the last 20 years have been dominated by policies based on ‘exit’ – that is choice, markets, and competition – the next is likely to be much more influenced by the politics of ‘voice’ – public pressure mediated directly on institutions and people to direct change at the local level. Exit, markets and choice will still be important but they will take place in, and be affected by, much more public comment, feedback and pressure.
Secondly, this voice will be on the citizens’ terms not on those of the NHS. Surveys, focus groups and the rest of the tools that organisations use to find out what ‘they’ think will still be useful, but the opportunities of cheap voice accrue largely to citizens not to the state. It is trivially cheap to use Twitter to ‘tweet’ to all your friends about how the nurse has just failed to wash his hands before taking blood from you, but for the hospital it costs time and money to mount any kind of response. Cheap voice has suddenly made loose networks of citizens much more effective whilst representing a complex, and potentially costly threat to organisations.
But for me, sitting in my GP’s chair, I know that people begin to make sense of the meaningless depredations of disease through telling and re-telling their stories. The web gives everyone new and public ways to tell the story of how we make sense of personal tragedies through small triumphs:
"Our son was just twelve days old when he died. Throughout this distressing time the staff on the Neonatal Unit were outstanding. They treated him with dignity throughout his short life... the staff made us feel that his life was as significant to them as it was to us. Nurse Jan made a print of his feet and hands and put them together in a card with some clippings of his hair. On Father’s Day there was some chocolate for me that was labelled from him."
The telling of such stories, the ability to speak even whilst grieving, has therapeutic benefits. Add the promise that by sharing what you have learnt you might be able to help improve a small part of the world for everyone and the sick are offered that most precious thing, the possibility of themselves being needed for their insights, of giving something back to the community of the well, just at the moment when they feel at their most powerless.
That the new forms of voice can go beyond the passivity of suffering, and begin to make sense of what had previously been meaningless is perhaps their greatest promise: “Mum’s illness was awful but we helped change things for everyone!” The act of helping others is consoling because it reconnects us at a time when we are at our most alone. The new economics of the web mean that for the first time service improvement could be driven by the intrinsic desire to find meaning within the experience of disease. Multiplied by the hundred thousand as only the web can, these transparent, directed dialogues move us beyond both exit and voice and offer new glimpses of redemption in a post-market world.
Paul Hodgkin is a General Practitioner and CEO, of Patient Opinion http://www.patientopinion.org.uk/
This essay is one of a collection of viewpoints which will be published to launch NESTA’s ‘Reboot Britain’ programme. Reboot Britain will explore the role new technologies and online networks can play in driving economic growth and radically changing our public services. The programme will begin with a one day event on 6th July which will look at the challenges we face as a country and how the combination of a new digital technologies and networked 'Digital Britons' can produce innovative solutions to tackle them. For more information please visit www.nesta.org.ukReuse content