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.

Lots of flim flam in the news about Neil Bacon's latest venture IWantGreatCare.org.uk

This is the new website where you can say pretty much anything you like about  any doctor registered  in the UK. Lots of indignant docs expressing outrage. The Patients Association sounding off with approval. Its also interesting because lots of people in the past have asked us whether Patient Opinion was going to produce a 'name your doctor' facility so over the years we've given quite a lot of thought to the pros and cons of this approach.

So what do we think? First off doctors - and every other professional -  need to recognise that they can't stop this kind of comment. And if IWantGreatCare fails or is sued out of exisitence there will always be RateMDs.com the American site that recently came to the UK and which - being covered by US rather than English libel laws - is perhaps more likely to last. 

But the deeper question is what do sites like IWantGreatCare actually achieve? Ostensibly they are about helping patients choose a doctor but there are a couple of crucial problems with this logic.

1. In the UK it is almost impossible to choose to see - or avoid - a particular named NHS doctor, other than a GP. Over the last decade Trusts have forced GPs to refer to the speciality not a particular doctor. This is because its much easier to maximise efficient use of out patient slots  when all referrals are in a single list than in 8 different lists for 8 different consultants. For the same reasons Choose and Book, the electronic referral and booking system, makes it very hard to for GPs to refer you  to a named doctor. 

 2. The deeper question is how much information about individual doctors does such feedback carry? Look at RateMDs.com who already carry lots of comments about lots of doctors and you'll usually  see that very critical comments about a doctor are quickly followed by an equal number of glowing reports. So what's Jo Patient meant to make of this? How much does it really help people reading these kind of comments?

So what  will IWantGreatCare actually achieve? Well two outcomes are likely. Firstly some patients who want to sound off about their doctors will love it. Others may want to express gratitude. The overall tenor of the site will reflect the balance between these two types of comment. 

Secondly doctors themselves are likely to find the site undermining. Good comments will be discounted whilst bad will tend to expand to fill available consciousness. 

There is a clear risk that in the long run  sites like this will devolve to serving the lowest common denominator of outrage. As such they will serve some kind of purpose but wise doctors, or at least those who want to sleep well at night, will either grow very thick skins (which is not good for their professional practice) or studiously ignore the sites altogether. In both  cases the sites loose any wider value.   

Its also worth noting the significant differences to Patient Opinion. Firstly on PO comments are tagged to department, ward or site rather than individuals. This makes critical comments easier to hear and easier to bear. Secondly because the comment is directed to the whole service stories often  indicate very practical solutions that are focused on the system not the individual. All this delivers a site where your comment as a patient can actually improve services for everyone. 

There have been some interesting questions raised recently, on the back of the Darzi review, about whether patients actually want to choose where they are treated.  Jennifer Tracey recently asked visitors to Radio 4's iPM blog "Do you want to choose the hospital you're treated at?"  The majority of responses were negative  and reflect the argument held in opposition to focusing on choice, that we should be making sure quality of care is the same wherever you go for treatment.  I thought I'd share some of the comments with you so you can see what I mean...

Do you want to choose the hospital you are treated at?

• "No.  All I want is good quality treatment, reasonably quickly, reasonably close to home.   These the are fundamental requirements of ALL hospitals, and we should be striving to acheive them in all hospitals.  Choice is a pointless concept that we don't need, and which detracts from the real issues."
• "No thanks. Just knowing I'd get good treatment at any hospital, ideally my local one, is all I ask for. "
• "I do not think we should be able to choose our hospital, as every hospital should offer the same outstanding level of care."
• "No - unless it is filthy; has nurses with attitude; doctors who ignore their pagers and turn up three hours later; admin staff who chat together while you are waiting to present for an appointment - oh hang on - that's most of my local hospitals. I'll change my mind - Yes I do want to be able to choose my hospital - preferably one in Australia or the USA please."

A particularly interesting comment came from someone obviously outside of the UK - "You mean to say you in Britain don't get to choose? What if the service you get is incompetent? What if the hospitals are flithy? You pay for it, why don't you demand better?"

These are the same comments and attitudes coming from our blogging clinicians and GPs - The English Physician says "Even for cold cases most will choose the nearest hospital, provided only they are confident they will be managed accurately and efficiently. For urgent serious illness, the shortest journey to the nearest capable unit is mandatory.  Where appropriate, choice is discussed as a part of good practice anyway."  Dr Grumble thinks its all a red herring, "...the government needs some way of getting patients to go to providers outside the NHS. It's all about back door privatisation. And the mechanism is patient choice and Choose and Book. It's not about patients. It's about government."

Its interesting to see in the latest national patient choice survey published by the Department of Health, that people were broadly happy with the hospital they went to, whether they'd had a choice or not, and that "...the process of being offered and discussing choice helps patients to decide a preferred hospital", which seems vaguely circular to me...

As Paul mentioned a couple of weeks ago, we've been shortlisted for a Catalyst Award for Social Technology - the awards which show how technology is already enabling people to connect with each other in new ways and do good things. 

We've been nominated for the David and Goliath award, for "something little that made a difference to a something big and powerful".  This also means we're eligibile for the People's Choice Award - so please show your support and vote for us.

Thanks...

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.

The NHS is in the news again today, this time its a report by the Healthcare Commission on maternity care that's got them all buzzing.  The report was commissioned after a series of separate investigations into deaths at maternity hospitals revealed similar problems.The report claims that many maternity units in England are failing to provide top quality care.  It states that:
“Most women giving birth in early 2007 whom we surveyed had a favourable view of the care that they received. For labour and childbirth, 89% rated their care as “good” or better, falling to 80% for the care they received after birth and at home. These figures, however, conceal significant differences between trusts; in the trust with the least favourable results from the survey only 67% of mothers reported their care during labour and birth as good or better, compared with 96% in the trust with the most favourable results.” Page 5 Healthcare Commission Towards better births: A review of maternity services in England July 2008

So there’s a huge difference in the level of care between trusts.  And different levels of choice as well…according to the report, while the majority of women have some degree of choice, such as a midwife-led unit, or a home birth, two-thirds of trusts could currently offer only a consultant-led service in its hospitals.   In 1995, the government pledged that by 2009, all women would have a choice of birth location.  According to the BBC, , midwives have said ministers would struggle to meet this promise.

As for the key findings of the report, these are:

• Levels of staffing were well below the average, indicating that they may have been inadequate. (Many of the maternity reports on Patient Opinion, even those saying thanks, indicate that staff were often "very busy").
• Consultant obstetricians did not spend the time recommended by their professional body on labour wards.
• Doctors and midwives did not attend in-service training courses consistently across trusts.
• There was not adequate continuity of care for women.
• Recommendations were not adequately adhered to for antenatal care, particularly for those women whose pregnancies were likely to be more risky.
• Women experienced poor communication, care and support after their babies were born.
• There were too few beds and bathrooms, particularly in labour wards.
• Inadequate systems for IT and data prevented efficient management of the maternity service, even among some of the larger and well-respected trusts.

Maternity Care ratings published in the Telegraph in January this year show the trusts which received ratings of Best performing, Better performing, Fair performing and Least well performing.  And the healthcare commision have made it easier to see the rating of local hospitals.

But it’s not all about the ratings. Where some stories like this one relate to a least well performing trust, others like this one come from a trust deemed to be best performing.  Stories of great care like this one from a fair performing demonstrate that perception of good care is also about dignity, respect and consideration shown to babies and new mothers.

The reports recommendations relate to monitoring standards of care; ensuring that there is sufficient staff; encouraging team working; training staff and keeping skills up to date; collecting information on outcomes; meeting the requirements of women from higher-risk groups.  One recommendation in particular caught my eye though. 

“Trusts and those commissioning services should ensure that there are regular and effective mechanisms for gathering and acting on the views of women using their services, and should ensure that they are represented in the process for planning and monitoring the quality and safety of service provided. “ page 6

Trusts only need to read, respond to and act on the stories, concerns and thanks available on Patient Opinion to see how their services can be improved.  Lets hope they follow that recommendation. 

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.

 I know, Darzi again, but this time it's news about something that's really happening...the National Library for Health is being reinvented as NHS Evidence.

A recent National Library for Health Stakeholder Briefing, states

It will be interesting to see what the new NHS Evidence Chief Operation Officer, Dr Gillian Leng will include in the portal and whether it will demonstrate what high quality care looks like from the patients perspective. 

Ben Bradshaw, Health Minister, has had some flack for his statement about a patients legal right to choose their GP.  The Darzi review is responsible, of course, for this renewed interest, by commiting the NHS to allowing patients to choose their GP.

Choice is contentious is education as it is in health, with some believing that "... ‘patient choice’ is a cover for the government’s desire to whip the health service into shape by introducing more and more externally imposed, soul-destroying, managerial targets."

But what happens when we look at choice from a patients perspective?  Ignoring for a moment the potential consquences GP choice may have, how do patients feel about the choices they have now?  Looking at responses from patients on the Patient Opinion site, it's clear that some feel frustrated by the process.  But where it works, it works very well.