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...

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...

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

"Earlier this year NICE and the NHS Institute were asked to feed into the Darzi ‘Next Stage Review’ report on how best to provide an innovative and accessible evidence service that will demonstrate real additional benefits for NHS staff and patients. A joint proposal for the creation of a new NHS Evidence portal was submitted to the Department of Health in May and has now been accepted."

 In reality, this means that the existing service, the National Library for Health, will now move to NICE and become NHS Evidence.  According to the briefing:

"NHS Evidence will be a new web-based portal that will provide authoritative clinical and non-clinical evidence and best practice on both what high quality care looks like and how to deliver it. "

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.