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?

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…. 

All health care systems are bedeviled by the problem that sick ill people make poor shoppers. Patients are consistently disadvantaged by having less knowledge, less power and more vulnerability than other players in the health care system. In economic terms this is an example of an actor-agent problem: doctors and 3^rd party payers have to act as agents for the principal actor (the patient) but inevitably and always the interests of patient, professional and insurer/government diverge. This is why markets are such a poor way to deliver health care. As Robert Evans a great Canadian economist said: ‘The search for the informed, rational consumer of health care is of the same order as the search for powdered unicorn horn’.The system is stuck because the costs of reversing the fundamental asymmetries of information, power and vulnerability have been too high to change. The direct result on patients is that their views are consistently under-valued and, combined with the dependence inherent in illness, they are systematically (if unintentionally) disempowered. The direct result on healthcare as a system is that these agent-actor problem gives rise to multiple conflicting accountabilities - to patient, tax payer, professional values, local budget, local partners, the scientific evidence-base, local and national political processes, staff, and somewhere out along the tail, the patient. These accountabilities have multiplied in recent years and the NHS now frequently appears as a Gulliver - magnificent, well-meaning, and gigantic but completely constrained by a thousand Lilliputian ropes.The web has changed some of the fundamental reasons for these asymmetries. This is most clearly seen with information where the free-for-all released by Web 1.0 greatly reduced informational asymmetries. For the first time patients could access the knowledge base of professionals. As esoteric knowledge disappeared out of one door, patients clutching web printouts entered by the other. Some information gradient remains but professional knowledge is no longer seen as either esoteric or zero-sum and everyone now recognises that the more patients know the better .

Web 2.0 creates other opportunities. Blogs, YouTube, and MySpace have dropped the cost of having a public voice to zero. Alone, this simply creates an over supply of voice which in turn leads to people shouting and becoming less civil in order to increase the chance of being heard. Thus to date, democratized voice has under-performed as a driver of quality in service industries.But the web has also created RSS feeds that enable your comment about an aspect of service to be directed to ‘just the right manager’. This dramatically increases the signal to noise ratio for busy managers. Cheap voice plus highly selective listening should substantially lower the costs of responding to citizen comments. Patient Opinion is about building system-wide information streams around these new, and as yet un-noticed, cost opportunities. The generic aim of these streams is to reduce the asymmetries to which patients are subject.The final piece of the jigsaw is to create a web currency that rewards public and staff for using feedback to change the service. Instead of clicks and hits such a currency would place a value on responsiveness and improvements made.   Public voice gives explicit power to patients. And becoming a real co-creator of change in the system empowers people in their struggle with illness. This is especially true when the change that patients suggest is directed to the benefit of others rather than to bettering their owwn immediate care.None of this will make markets more suited to health care but it should mean that where ever patients are struggling with the helplessness, lack of control and fear associated with illness, they can find tools that help them to feel more informed, included and valued.     

 

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. 

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.

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...

Recently data on survival rates (or death rates...) in hospitals is being made available by NHS Choices, run by Dr Foster, to help patients know how well a particular hospital is performing.  Presumably not the type of information you're desperate to have access to if you are having a mole removed, but you can listen here to both the opinions of Dr Foster's Tim Kelsey and Bernard Ribeiro of the Royal College of Surgeons on making this data available.

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...