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!

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.

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.

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…. 

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.

This coming week sees the launch of our new campaign to help NHS organisations get the most from all those patient stories on Patient Opinion and NHS Choices. We're focussing at first on PCTs and James has produced a new version that will really help busy staff get to grips with patient feedback from any web-based source. This service is designed to get PCTs up and running today with may of the Darzi themes - and to make sure that they can stay abreast of how patients are already using the web to influence the services they get. 

Giving a personal service to all the busy NHS staff that use the service is one of the things we really enjoy doing - so we're just launching 'The Patient Powered Web is Here' campaign to two new SHAs at present - East Midlands and London. (Of course we'll also be sending packs to all our current customers in NHS Northwest and NHS Yorkshre and the Humber too). But if you'd like to know more, then just drop me a note.

We also think the Patient Powered Web approach will really suit PBC Consortia who want a quick cost-effective way to monitor what their patients think - so we're also developing a pack specially to suit their needs.

Yes, you wait for years and then two come along at once. Patient Opinion is a finalist in the Catalyst Awards for Social Technology, a spiffy new award backed by the Cabinet Office, the Council on Social Action, and the great people from UnLtd and Polecat. Catalyst Awards come in some great categories that really piqued our interest - how about 'The Shock of the Good Award' or the 'Chalk and Cheese Award' (brings two unlikely partners together) for being 100% better than the usual 'best in breed' dog show award categories?

The one we entered was the David and Goliath Award (now why did that appeal to us?). We haven't won yet - Paul is pitching to the judges this week as they make their final selection - so wish us luck! After that you get to vote for the People's Award (dont worry we'll be in touch encouraging you to hit those voting buttons) and the winners will be  announced on July 24th. 

I can't believe it. I haven't won anything since I was 17... but last night we won a New Statesman New Media award in the "community activism" category.

We're so excited, and delighted, and just really really pleased. Winning an award is so good for making you feel like what you are doing is worthwhile, and could make a real difference, and giving you new resolve to keep going.

Oh dear, this is turning into an acceptance speech. No tears, promise. But I'd like to thank my mum, my dad, and my laptop. Oh, and the many very good friends, and good people, who believe in us and are so supportive.

Patient Opinion is a finalist in the New Stateman's new media awards, in the "community activism" category.

Which is nice. I'll let you know next week if we won anything, or just went home with the "50p off your next purchase" tokens.

Hmmm... now where's my dinner jacket? Oh yes, at the Oxfam shop. 

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.