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.

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...

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 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.

As James has said in this post, thanks to all those who have been so supportive of us winning the Community Activism New Media Award.  As Simon Dickson says “... it’s good to see Patient Opinion getting recognition in the Community Activism category - their approach to patient feedback, and how it can help improve NHS services, is not going unnoticed.”

And of course, thanks to all the patients who have contributed their stories, helping us, as PacesCEO says, to "...shift the balance of power in relationships, for instance between those who provide services and those who receive them, but to create wholly new forms of relationship."

Today saw the publication of Health Minister Lord Darzi’s report High Quality Care for All, containing “ambitious plans" to raise the quality of healthcare for patients right across the NHS.

According to the NHS site Our NHS, Our Future, “High Quality Care For All sets a new foundation for a health service that empowers staff and gives patients choice. It ensures that health care will be personalised and fair, include the most effective treatments within a safe system, and help patients to stay healthy.”

So far, responses to the report have varied.  In response to the recommendation that hospitals are to be fined or rewarded with financial bonuses of up to 5% of a hospital’s budget based on what patients think of the quality of their care, a post by Tom Reynolds on the very enlightening blog Random Acts of Reality notes that "Giving patients choice is a fine idea in principle, but for many of the patients that I deal with they just don't have the knowledge to make an informed choice on their treatment.”

Careworld.net, a blog aiming to “highlight the inadequacies, the poor decision making, the hypocrisy and their consequences”, points out that the reports is “silent on the issue of the NHS top down highly bureaucratic structure…” noting that  “this is an important opportunity missed.”

The Jobbing Doctor, whilst acknowledging that dissection of the review over 2-3 weeks is in order, describes it as “a sagging souffle” and “a hugely disappointing review.”  In my considered opinion, whatever the responses to the review, it at least has identified that staff must be empowered to make real changes, and so effectively address ever increasing expectations from a public who are constantly being told that the NHS is to be led by them.

The challenge now is to turn Lord Darzi's vision into reality, in a notoriously slow moving and heavily bureaucratic NHS.  Practically speaking, Patient Opinion aligns well with Darzi's key recommendations, providing support to staff by demonstrating exactly what it is patients want and need, based on their experiences, suggestions and comments and providing support to patients by helping them make informed choices about their care.

As it’s been a great week for recognition (we’re finalists in the UK Catalysts awards and the New Statesman New Media awards), maybe we can forgive Lord Darzi for choosing to mention NHS Choices but forgetting to mention Patient Opinion in his plans for a high quality NHS.

Last month, Patient Opinion’s own James Munro attended NESTA’s flagship conference The Innovation Edge.  NESTA supports innovation across the UK, and have generous in providing their enthusiasm, time, expertise and funding in support of Patient Opinion’s expansion to cover mental health services across England.

James was interviewed at the event, where he spoke about Patient Opinion and more specifically, the mental health pilot with the 5 Boroughs Partnership NHS Trust in Warrington. When asked about the potential difficulties which can be experienced in making changes in a monolithic bureaucracy like the NHS, James noted that sometimes improvements at ward level were easier than making wider organisational changes.  My experiences support this – the closer you get to the frontline, the more you are likely to make a difference to patient care.

The video contains some really key messages about what Patient Opinion is doing, and emphasises that improving care should start with the patients and users of the NHS

Occasionally I realise that my Spanish O level has more uses than just helping me order tapas and beer while on holiday.  It has enabled me to read an interesting post from Javier Llinares Salas on Health 2.0. (If you don’t read Spanish you can get an idea of what’s being said by copying Javier’s post into Babelfish.) Javier talks about private web 2.0 initiatives which supplement and intend to improve the public service they focus on, which enable the public to have some control over the services they receive.  One of the examples he mentions is FixMy Street.   

Patient Opinion gets a mention from Javier, as one such tool which gives power to the patient.  For Javier, sites like Patient Opinion represent a radical change for the administration of public services, helping to move towards a truly patient-led NHS.  In his words “The revolution has begun.”  

Patient Opinion is also getting some great press from it’s inclusion in the e-Health Insider report on Web 2.0 in the health Sector, where Patient Opinion is described as

 “...a standard bearer in connecting public feedback into the development of health services”.

(thanks to Explain Health for publishing that particular quote).