A rather depressing posting arrived on the Patient Opinion site today.

A sentence near the end sums it up rather well: "How do I complain about the waste-of-time complaints procedure?"

The posting reminded me that the Patients Association had recently published their report NHS Complaints: who cares? who can make it better? So I went off to read it and see how typical this contributor's experience might be.

The Patients Association surveyed 1500 patients for its report, of whom fewer than 500 responded, so there is plenty of room for bias. But one finding caught my eye: of those with experience of using the NHS complaints system, 20% had found the process "pointless" and almost a further 30% had found it "totally pointless". By contrast, about 13% had found it "useful" and a further 2% "very useful".

There is quite a strong message here. Whatever it is that patients are trying to achieve through the complaints system, it evidently fails to deliver for a large proportion. But what are patients trying to achieve?

The report's findings suggest that a large proportion of patients want the system to:

• make sure everyone learns from a mistake
• ensure it doesn't happen to other people
• ensure patient's views are heard in the future
• change clinical behaviour

Interestingly, this fits exactly with our own experience at Patient Opinion. Sometimes a hospital will contact us about a critical posting on our site. "Can you remove it?" they say, "and ask the patient to make a complaint instead?" We don't remove it (of course), but we will email the patient in confidence to ask if they would like to make a complaint. And in every case to date, the patient has replied: "No, I don't want to make a complaint. I'm not trying to get anyone into trouble. I just want the problem fixed so it doesn't happen to anyone else."

Reflecting on this, a series of vague but insistent thoughts are beginning to form:

• Is the number of complaints in the NHS driven by the lack of alternative ways to feed in one's experience?
• Do hospitals drive people towards the complaints process because it is the only institutional system available?
• If other systems were available (you can see where I'm going here) which offered the possibility of being heard, helping people to learn, and making a difference to the service, would patients prefer that to the existing complaints system?
• And what would need to happen (in any system) for the majority of people to say that the process had been "useful" rather than "pointless"?

I might as well be blunt: could Patient Opinion help hospitals move towards a triple benefit: fewer complaints, greater learning from experience, and happier patients? I think we should find out!

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…. 

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.

Heretical thought coing up here... but does  feeding back patient stories to Trusts and managers actually have any effect? The belief that it does is obviously core to what Patient Opinion is about. But what is the evidence for us being effective?And is there evidence from other fields?

There are quite a lot of examples on Patient Opinion of Trusts making improvements or saying they are going to do things as a direct result of patient comments. And increasingly patients comment on whether this has happened or not.  So we know that in principle it can work. And there is a lot of evidence from studies of innovation in the commercial sector that customers are increasingly important as co-producers of new products and of innovation - for example Eric Von Hippell's  work at MIT that shows that customer suggestions were  the source of 60% of all successful innovations in some fields. 

But - to keep asking the unthinkable- does the same really work in the NHS? For all our success there are still hundreds of comments on Patient Opinion  that would make great learning tools for teams or that are crying our for responses - that go unanswered. 

Of course there are lots of reasons why this might be so:

1. We're all - Patient Opinion, Trusts, PCTs, patient groups - at the begining of this learning curve of understanding how best to use the web to improve public services at scale.

2. The NHS has a 'process' culture. It always defaults to trying to change  the protocol, or the guideline, or the staff policy in the belief that then reality on the ground will automatically change too. When this works it's a very efficient way to generate change. But it often doesn't - especially for 'relational' aspects of care (How did you feel? Were you washed gently? Listened to? ) as opposed to the transactional (Was you BP measured enough? Were you given advice to stop smoking? How long did you wait?). 

3. The feedback model presents the NHS with thousands of tiny blemishes. The NHS knows that reaching for a protocol won't work for these because each comment is about something much less (affecting fewer people) and much more (the core experience of being cared for) than the 'system' or the 'protocol' itself. So for busy staff feedback systems like Patient Opinion or IWantGreatCare or Your Thoughts on NHS Choices seem  to be no more than a way of letting a thousand sticking plasters bloom. And why would they want that?

The answer to all this is a change in culture so that the individual interaction and the relationships between people that underpin all protocols and systems everywhere are seen as the core of care not added extras. Feedback done right is about a thousand opportunities to let staff creativity and vocation flourish, to help them go home at the end of the day feeling that they have done a really profesional job. Done wrong it is about a thousand opportunites to ignore what patients are saying, or to beat up busy staff with yet more innane targets such as how many times a day nurses smile. Or worse that 'caring' in the sense that seriously ill people need looking after, suporting and lisetning to, becomes trivialised into the Have a Nice Day approach of 'customer care'. 

Slowly this is beginning to happen. But the task for all feedback sites like us is to keep innovating and learning about how to use the power of the web to change  a thousand feedback stories into better services in ways that scale and don't demand a new project or programme or 15 meetings each and every time you want to get something done.

Now that the Department of Health has decided it will be spending £60-80m over three years to develop the NHS Choices web site, it's worth having a rethink about how our cash might best be spent.

In both the UK and the US, new thinking is rapidly emerging on how governments should be on the Internet. Some are arguing, to put it bluntly, that governments shouldn't be building web sites at all. Instead, the first priority of government should be to make its data available on net in ways which are open, standards-compliant, and re-usable by third parties - whether they be commercial or third sector organisations - because others will innovate around the data far faster and more freely than government ever can.

And if governments do find a need to build their own web sites, they should do so using these same data services that they have exposed for public use (providing a nice incentive to make sure they work).

Interestingly, this view seems to be striking a chord with our own Power of Information taskforce, which has recently succeeded in opening up more public sector information for public reuse (great work!).

Not wanting to be left out, and in an enlightened spirit of public service, Patient Opinion has itself "mashed up" the public feedback which government publishes on NHS Choices, with public feedback submitted through our own site. Why? To make it easier both for patients and staff to access all the feedback about their local services, and to increase the chance that public feedback will generate real improvements in services.

So, coming back to that £60-80m about to be spent on "a web site"... wouldn't it be interesting to discuss the possibility that, first, they build a set of data services for public use. (This thinking is already underway in government.) And only after the data has been shared, build the government site (on top of the data services) to present it. Or, at that point, save the taxpayer some money and just link to sites which are already doing a good job with the same data.

I couldn't help having mixed feelings when I noticed that Patient Opinion had been mentioned in the new cabinet Office white paper Excellence and Fairness: achieving world class public services. Even though, as we all know, there is only one thing in life worse than being talked about, and that is not being talked about. So of course I am completely delighted that we were mentioned at all.

Here's what the white paper says:

"NHS Choices is a large scale example of the public sector soliciting feedback on health care, building on the example of websites such as patientopinion.com (sic)".

It's that phrase "building on" that perhaps needs a little translation. In ordinary English "building on" has a sense of "taking forward", "developing", or even "improving". What does it mean here? Well, from my (albeit limited) personal perspective three possible translations come immediately to mind.

1. "Copying": the feedback section of NHS Choices is an unashamed rip-off of our work. We saw early plans for the site which included actual screenshots from Patient Opinion.
2. "Dumbing down": currently, the feedback section of NHS Choices doesn't improve on what we had already done - it is far less sophisticated both in vision and in technical implementation. A trivial example: feedback isn't searchable.
3. "Undermining": we are sustained through subscriptions from NHS organisations. But now there is an alternative "Official Feedback Site" being offered to the NHS "for free" (i.e. paid for centrally by the taxpayer). You can imagine the rest.

Try substituting any of these suggested translations into the white paper and see if you feel it reads more accurately.

We've been itching to link to Tom Watson's recent post about NHS Choices, and now we have our blog set up, we can, and just did.

Don't get me wrong - Tom Watson seems to be a thoroughly excellent chap. I don't know him personally, but if I met him I would buy him a drink.

I suppose I was just disappointed that he blogged about patient feedback via NHS Choices, and somehow forgot to mention that Patient Opinion was delivering the goods before NHS Choices was even a twinkle in the eye.

As quite a lot of people pointed out.