Last week the King’s Fund ran an interesting day on improving the experience of patients in hospital, as part of its Point of Care programme. Lots of good people with plenty of expertise and good ideas.

But one thing struck me quite hard: whenever people start talking about “listening to the patient experience”, the question of measurement comes up – and sometimes takes over. Often, there seems to be an implicit assumption that just by measuring something, we’ll create change. So let’s measure the patient experience!

I’ve got nothing against measuring things (when I had a career, it was as a quantitative health services researcher). But we’ve got to gain some clarity over what measuring is for.

Measuring is fundamentally about the past. How are things now? How were they last week? Did we improve? But nothing about measuring changes the future in any radical way. If anything, measuring reinforces a future which is similar to the past, only “a bit better”.

More than that, I’d argue that measuring is an act of power, and being measured is an act of powerlessness. By measuring “the patient experience” we reinforce, rather than question, the patient’s status as object, rather than subject. Nobody with real power gets measured.

The rhetoric of understanding “the patient experience” is about listening – but the implementation is about measuring. At the event, I asked whether there was a conflict between listening and measuring. Now I think there is.

To me, listening is an act of compassion which recognises a common humanity and, I believe, holds the potential to create radically different futures. Measuring won’t change the world: it will only tell you whether the world changed.

Unless you think differently?

There's a lot of talk around about using technology to improve healthcare - making more information available, giving patients a voice, helping them manage their care by making patient records accessible online, and it's thowing up some real key issues.  Empowering patients to have more knowledge about their conditions, more information about the services they receive, to have more choice, appears to a step in the right direction, but what about the implications?  A lot of the issues are around power and who is in control - the public has access to more information than ever before, and this all works against the paternalistic model of care.

We are starting to see a real power struggle, between those who have traditionally controlled healthcare (clinicians, GPs) and those receiving it.  For a number of years there's been a recognition that expert patients, those with a good understanding of their condition, visit their GP less often - in 2005 the Department of Health launched the Expert Patient Initiative.  At the time only 21% of doctors were in favour of this approach to supporting those with long term conditions like diabetes, arthritis and Parkinson's, there's still a considerable number out there who think patients "do not have wisdom but follow prejudice, hearsay, and urban mythology" (Ray Jones).

Patients are being encouraged by the government to take control of their care, the internet has supported a new phenomenon, patient opinion leaders, and expert patients are becoming more and more common, as this post in HSJ indicates "People with chronic conditions are sharing their stories with each other, not just for emotional support, but for the clinical knowledge they gain in an online community." (Jane Sarasohn-Kahn of the think tank THINK-Health and author of a report on health 2.0).

This power struggle is becoming a major issue in the US.  According to Dr. Robert Lamberts, an internal medicine physician and medical blogger in America “Doctors used to be the only source for information on medical problems and what to do, but now our knowledge is demystified.”  “When patients come in with preconceived ideas about what we should do, they do get perturbed at us for not listening. I do my best to explain why I do what I do, but some people are not satisfied until we do what they want.”

Sharing information is driving the shift in power.  Patients have a voice and have access to others stories about their care, but is anyone really listening to them?  Here's the real issue - technology is just an enabler, it supports change and improvement and innovation, but it can't make it happen.  Without the ability for people to make it happen, it won't.  Throwing money at technology is not the answer.  Technology can only go so far, it needs a real, adult conversation between patient and doctor and the ability of staff to make changes without being stuck in a bureaucratic loop.  Patients are changing and starting to take control, those working in the NHS need, in my humble opinion, to release some.

From time to time (well, about every half an hour) we sit around the PO office throwing around ideas about how our site needs to develop now. What's the next leap forwards?

One idea that comes up a lot goes something like: "Wouldn't it be great if people could use the site to find other people who face the same challenges/have the same condition/live nearby/use the same hospital?"

And it is a great idea. And I suppose, because of the enormous myFace hype, everyone thinks everything has to be a social network.

But the last time we had this conversation, I realised something: that doesn't really excite me. I can see how helpful it can be to find other "people like me" and support one another. But somehow, I don't want to build one myself.

What did excite me was when we went to the HQ of Which? in London a few months ago. In their reception they have a big slogan on the wall that says something like "The aim of Which? is to make consumers as powerful as the organisations they have to deal with".

Now that does excite me. For me, the aim of Patient Opinion is to help the voices of patients and service users become as powerful as those of NHS organisations. After all, it is our NHS, and it means a lot to us.