Last week I talked about Patient Opinion at Alex Stobart's very excellent ScotWeb2 unconference. Lots of very interesting, knowledgeable and motivated people there, so it was a great day.

One or two people wanted the slides, so I've put them on SlideShare and embedded them here:

We're keen to provide a proper Patient Opinion service for patients and carers in Scotland who want to offer feedback about their health care (and we already get stories). One challenging issue, which we are already bumping into elsewhere too, is that there are many, many small hospitals located in very sparsely populated areas.

Why is this a challenge? Because we aim to maintain the confidentiality of those posting on Patient Opinion, and because we don't want to inadvertently defame a member of staff. Suppose we receive a posting about the Royal Isolated Hospital which says: "I was seen at this hospital last week with my genital warts. The nurse I saw was clearly incompetent." So far so good: the patient and staff member are not identified - unless you happen to live locally. In which case you and everyone else round about will know that the only patient seen there in the last month was Iain, and the only nurse at the Royal Isolated Hospital is Margaret.

This doesn't seem desirable - but neither does the option of publishing feedback without saying which service it is about.

We have a few ideas on how we might tackle this - but we're looking for more. Suggestions, please!

Among all its myriad wonders, one thing the web does well is enable every voice to count. Even the voices of people who don't usually have a voice.

That's been one of the key values driving the Patient Opinion team. And now we're pushing this a little bit further through our partnership with Homeless Link, with our attempt to bring the voices of homeless users of health services into the heart of the NHS.

Will it work? We don't know, but we think it's worth a try. Remember, On the Internet, Nobody Knows You're a Dog.

The other day we blogged about "the big picture" of the last 100 postings on Patient Opinion.

So a few people said: "well, OK, but what about the responses from the NHS?" And, obviously, we couldn't resist. So here's a Wordle of the last 100 responses posted on Patient Opinion.

Sometimes people ask us: so what is everyone saying? Can't you just summarise it all? Don't bother me with all these stories - just give me the big picture.

So here it is, thanks to Wordle. The big picture of our last 100 postings.

Yesterday, Rotherham Hospital held a remarkable, perhaps pioneering, event attended by 80 or so staff from all parts of the hospital, from consultants to security staff, from admissions clerks to pharmacists. During the day, staff reflected on their interactions with patients and relatives by engaging vigorously with a small group of actors who presented a single scenario which could be played, and replayed, with direction from everyone present, until it felt "just right".

The event was called Every Interaction Counts. It was stimulated by a posting on Patient Opinion in which a relative of one of Rotherham Hospital's patients raised concerns about the care his step-father had received in his final days.

The hospital made very speedy and helpful response on the site, avoiding a defensive tone, and followed up with a meeting with family members to hear and respond to the issues raised. The author of the original posting took the trouble to post a very full and positive report of this meeting on Patient Opinion.

From our point of view at Patient Opinion, this is remarkable enough: if all hospitals across the UK were to respond in such an open, sensitive and non-defensive manner, we would be delighted. But more was to come.

Patient Opinion discussed with the hospital how the lessons from this one incident might be shared right across the organisation. At the same time, we were fortunate to receive a private donation specifically for just such a purpose. The result was a day in which a large group of hospital staff participated, reflected, engaged fully with one key difficult, vital, human question: what does it mean to care?

No doubt other members of the Patient Opinion team - especially Paul, who brought the day into being - will also blog with their perspectives. Or they may add postings on the main Patient Opinion site, where we have (a bit of a hack) set up the event so that participants can post their responses and reflect on whether - or how - it changes their daily practice. And in a small way, this is the start of a pilot for a new set of tools we aim to create which will enable staff and patients to work together to change services.

But, for now, it is enough to applaud the leadership and courage of Rotherham Hospital in taking the first, brave steps towards a new way of doing things.

As if by magic, after my blog post yesterday on patient complaints, today sees the release of a National Audit Office report catchily titled Feeding back? Learning from complaints handling in health and social care.

So what does it say? In a nutshell (and I quote):

There is, in particular, confusion as to how to access and navigate the complaints system; lack of public confidence in the system; concern over the time taken to respond to complaints; a failure to find a sustainable and effective independent resolution stage; and limited sharing of lessons within and across NHS bodies.

Among other highlights, the NAO found that:

• only five per cent of people who were dissatisfied about the NHS went on to make a formal complaint
• few trusts capture and report data on complaints in a systematic way
• a fifth of complainants reaching the Healthcare Commission stage simply wanted "an apology or recognition of the event"
• only one third of complainants considered that the organisations they had complained about had demonstrated that lessons had been learned as a result
• in many cases trusts had genuinely learned from complaints but did not tell the complainant

Hmmm... all this feels entirely consistent with yesterday's conclusions. Can Patient Opinion help with all of this? Yes, I think we can.

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!

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?

Last week that staid and august body EURIM published its report on "transformational government".

The bit that caught the attention of some bloggers was the idea of "sous-veillance". The report said:

"New web applications such as YouTube or Patient Opinion enable people to monitor the state and to be heard. People can easily post videos of dirty hospital wards, of uncollected rubbish or of pot holes in the road, to a world-wide audience...Sous-veillance might transform political engagement due to its ease of use, by engaging even the time-poor majority and extending citizenship beyond the usual special interest groups.

What is extraordinary is how rapidly the notion of "sousveillance" has moved into the mainstream of political discourse - and that people can point to practical examples such as Tidy Oldham, and even Patient Opinion (which I think I would prefer to see as co-creation rather than any kind of -veillance).

But EURIM also says something else which, from where I sit, feels important. It says:

"The key lies not in treating users as passive recipients but in engaging them as active partners in the creation and development of their own services. This will require new community governance models from design to delivery in a ‘virtuous circle’ of participation, collaboration, commitment, accountability and feedback, both online and offline."

I think that's right. This isn't about "building a website" - ultimately, it's about building a different way of doing things. 

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.