Conversations are the essence of healthcare.  Get them right, and ill people feel better.  But in the world of public conversations – of complaint or public consultation – it is as though NHS staff get instantly transported back to the world of the silent movie.  Conversations become grey and stilted, each phrase jerking past the gimlet eye of the inner lawyer that appears like magic in the heads of the professionals. 

But a powerful new global conversation has begun.  Through the Internet, people are discovering and inventing new ways to share relevant knowledge with blinding speed.  As a direct result, the conversations that we can have with patients are getting smarter – and getting smarter faster than most organisations. In a conversation people communicate in language that is natural, open, honest, direct, funny and often shocking.  Whether explaining or complaining, joking or serious, the human voice is unmistakably genuine.  It can’t be faked. Most corporations and organisations, on the other hand, only know how to talk in the soothing, humourless monotone of the mission statement, marketing brochure, and your-call-is-important to-us busy signal. In the ears of patients and public this can sound like the same old tone, same old corporate steam roller over our helpless, small, warm bodies.But learning to speak in a human voice is not some trick, nor will corporations convince us they are human with lip service about “listening to customers.”  They will only sound human when they empower human beings to speak on their behalf. Health workers are used to having important, serious, big conversations with patients.  This should give them a big advantage in holding authentic, useful conversations on the web once they get started.  All we need to do is get out of their way. 

Tradition, corporate firewalls and over-zealous lawyers have all limited the ability of patients and staff to converse about services.  It’s going to cause real pain to tear those walls down.  But come down they will because democratised voice on the net will pull them down.  The result will be a new kind of conversations.  And it will be the most exciting conversation organisations have ever engaged in.

(This is adapted in part from the wonderful Cluetrain Manifesto which was authored long ago by, amongst others, Doc Searls whose writings are always impressive - so many thanks and aknowledgements).

The NHS is institutionally attuned to the big things – what’s coming down from the big beast in Whitehall or the latest missive from the Chief Executive. This stacks up into institutional agendas that focus on things like Should we be shutting the casualty unit? Do we need another Consultant surgeon? How are we going to implement the Darzi report?

And when that isn’t occupying the operational brain space then it’s all the middle range stuff – how do we reduce the number of expensive bank nurses? When is the next data return due? How do we implement the latest policy on C difficile?

But the experience of the patient is made up of the micro – Was I washed gently? Did I feel included in my care? Was the place clean? Was it too noisy to sleep at night? Such things are visible to professionals who hopefully care a lot about getting them right, but they are more or less invisible to the institution except when they result in a complaint.

Patient Opinion takes thousands of these comments about micro aspects of care and makes them more visible. But what happens then? Well often not a lot. Being focused on the strategic or the middle-range must-do’s means that busy staff all too often see patient feedback as something that just highlights irritating blemishes. At best its something to add to the already over-long To Do list. At worst something that can be easily ignored.

So how can Patient Opinion turn blemishes into blossoms? How can patient comments help set a thousand flowers blooming? Well the answer here is more than the technology. The latest guidance about how government should use Web 2.0 says that people should be prepared to respond quickly, listen and act. Which as Dan Herman points out on wikinomics blogs is great advice.

But our experience on Patient Opinion is that the only people who aren’t caught in the cross fire of conflicting incentives here are the patients. So the trick is using their energy, enthusiasm, and ideas to drive micro change hundreds of times across the NHS. One early example is allowing people to comment on how the trust has responded – see what one less than pleased punter thinks of the hospital's response to their posting.

No one thought that thousands of people would step up to the mark and help create Wikipedia. Or that there were millions of people just waiting for an on-line auction site. The trick is to find ways to galvanise people’s real enthusiasm for the NHS into a process that involves staff and causes thousands or service improvements to blossom. A good analogy perhaps as creating this culture is probably more like gardening than meeting policy targets or implementing Lord Darzi’s report. Slow, gentle persistent work to get the conditions right. And resisting the temptation to pull everything up by the roots once a day to see how they are doing.

Yesterday the London Evening Standard ran a story on the "nightmare" of maternity care in London, prompted by stories women have shared on Patient Opinion about their bad experiences of giving birth.

For example, Maree calls her experience of childbirth "terrifying, confusing and demeaning". Anonymous 2 found "the showers were flithy and paint was peeling off the wall" where she gave birth. Anon reported "cockroaches in the communal eating area". And today on Patient Opinion, Sam told how she feels that her experience has left her not with post-natal depression, but with post traumatic stress disorder.

To be sure, we hear plenty of stories of extraordinary care too. Often, these too will move us to tears.

But that's not the point. The point is that plenty of women are saying, very clearly and courageously, that their experience simply wasn't good enough - and, in some cases, was actually harmful.

The point is: 15 years after the Changing Childbirth report, surely we can do better than this?

Does it matter who runs web-based public feedback sites? There’s been some pretty heated discussion in the past with lots of people saying that citizens will only trust sites if they are independent of government (and we’ve certainly added our share of heat to support this argument!).  Meanwhile the government and people in the health service often think that Joe Public just doesn’t care and the NHS is a trusted brand that people will be happy to give feedback to. 

Up to now this argument has been almost exclusively assertion-based on both sides because web-based feedback at scale is all so new that there has been little hard evidence either way. But now that NHS Choices has been collecting feedback for more than a year we’re beginning to get some results from this natural experiment in citizen democracy and feedback.

The data so far is interesting. In terms of the numbers of postings both sites generate about equal volumes of stories across England.  Thanks to a Freedom of Information request made by someone on MySociety’s fabulous FOI site we now know that:

·        NHS Choices reject around 24% of all stories submitted compared with a 5% rejection rate for Patient Opinion.

·        Comparable hospitals respond more frequently to stories on Patient Opinion than on Choices. Comparing like with like across both sites  42% of all postings on NHS Choices generate a response from the hospital compared with about 65% on Patient Opinion.

·        Length of story and response are about equal on both sites although stories in general are a bit more positive on Patient Opinion. 

For Patient Opinion we also know that stories are reasonably balanced across all classes: the number of stories from the less affluent 50% of postcodes more or less equals the number from the most affluent. Comparable data is not available for NHS Choices.   So no firm conclusions yet but some interesting straws in the wind.

And of course we’re hardly unbiased in all this. What is needed is a quick study of both sites using full access to internal data by someone nice and independent. So we’ve suggested to the Central Office of Information in Whitehall that this might be a really interesting thing to do before we spend lots more on huge government sites like NHS Choices or – conversely – perhaps waste (rather less) money on independent organisations like us. And happily they seem quite interested. We’ll keep you posted….