I have read two stories this week.

The first was written in an interesting, contemporary literary style – you know the sort – short sparse sentences almost factual, leaving lots of ‘space’ for your own imaginative inference, not making explicit links between facts and events but leaving you to do that for yourself.  It was a love story, rather charming and quite short, describing a familiar narrative of boy meets girl, invites her to the cinema and they fall in love (probably).  It could be described as Chandleresque in style – though it isn’t that good – in fact it could have been written by an 11+ student.  It wasn’t though – it was in fact written by a computer using a form of artificial intelligence called natural language generation with genuinely no human input.  You can read how it was done here.

The second story I read is a description of a falling out of love – of the medical profession with the IT industry and the electronic patient record.  This one is very well written by Robert Wachter and is a warts and all recounting of the story of the somewhat faltering start of the digital revolution in healthcare.  It is called ‘The Digital Doctor’ and I would highly reccomend you read it if you have any interest in the future of medicine.  It is not the manifesto of a starry eyed digital optimist, nor is it the rantings of a frustrated digital skeptic – he manages to artfully balance both world views with a studied and comprehensive analysis of the state of modern health IT systems.  His realism though extends to understanding and articulating the trajectory of the health IT narrative and where it is taking us – which is a radically different way of delivering medical care.  I won’t use this blog to precis his book – its probably better if you go and read it yourself.

From Data to Information to Understanding

The falling out that Dr Wachter describes really is quite dramatic – this is the United States the most advanced healthcare system in the world – yet there are hospitals in the US that advertise their lack of an EPR as a selling point to attract high quality doctors to work for them.  Where has it gone wrong?  Why is the instant availabilty not only of comprehensive and detailed information about our patients but also a myriad of decision support systems designed to make our jobs easier and safer to carry out – not setting us alight with enthusiasm?  In fact it is overwhelming us and oppressing us  – turning history taking into a data collection chore and treatment decisions into a series of nag screens.

The problem is there is just too much information.  The healthcare industry is a prolific producer of information – an average patient over the age of 65 with one or more long term conditions will see their GP (or one of her partners) 3 – 4 times a year, have a similar number of outpatient visits with at least 2 different specialists and attend A&E at least once.  That doesn’t include the lab tests, x-rays, visits to the pharmacy, nursing and therapy episodes.  Each contact with the system will generate notes, letters, results, reports, images, charts and forms – it all goes in to the record – which, if it is a well organised integrated electronic record, will be available in its entirety at the point of care.

Point of care being the point – most health care episodes are conducted over a very short time span.  A patient visiting his GP will, if he’s lucky, get 10 minutes with her – it doesn’t make for a very satisfactory consultation if 4 or 5 of those minutes are spent with the doctor staring at a screen – navigating through pages of data attempting to stich together a meaningful interpretation of the myriad past and recent events in the patient’s medical history.

How it used to be (in the good old days)

So what is it that the above mentioned hospitals in the US are harking back to in order to attract their doctors?  What is the appeal of how it used to be done when a consultation consisted of a doctor, a patient and a few scrappy bits of paper in a cardboard folder?  Well for a start at least the patient got the full 10 minutes of the doctors attention.  The doctor however was relying on what information though?  What the patient tells them, what the last doctor to see them chose to write in the notes, and the other events that might have made it into their particular version of this patient’s health record.  This gives rise to what I call a ‘goldfish’ consultation (limited view of the whole picture, very short memory, starting from scratch each time).  We get away with it most of the time – mainly because most consultations concern realtively short term issues – but too often we don’t get away with it and patients experience a merry go round of disconnected episodes of reactive care.

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When I used to still practice intensive care medicine one of the things that occupied quite a lot of my time as ‘consultant on duty for ICU’ was the ward referral.  As gatekeeper of the precious resource that is an intensive care bed my role would be to go and assess a patient for their suitability for ICU care as well as advise on appropriate measures that could be used to avert the need for ICU.  My first port of call would be the patients notes – where I would go through the entire patients hospital stay – for some, particularly medical patients, this might be many days or even weeks of inpatient care.  What I would invariably find is that the patient had been under the care of several different teams, the notes would consist of a series of ‘contacts’ (ward rounds, referrals, escalations) few of which realted to each other (lots of goldfish medicine even over the course of a single admission).  I soon ceased to be surprised by the fact that I, at the point of escalation to critical care, was the first person to actually review the entire narrative of the patient’s stay in hospital.  Once that narrative was put together very often the trajectory of a patient’s illness became self evident – and the question of whether they would benefit from a period of brutal, invasive, intensive medicine usually answered itself.

Patient Stories

The defence against goldfish medicine in the ‘old days’ was physician continuity – back then you could  expect to be treated most of your life by the same GP, or when you came into hospital by one consultant and his ‘firm’ (the small team of doctors that worked just for him – for in the good old days it was almost invariably a him) for the whole admission.  They would carry your story – every now and then summarising it in a clerking or a well crafted letter.  But physician continuity has gone – and it isn’t likely ever to come back.

The EPR promised to solve the continuity problem by ensuring that even if you had never met the patient in front of you before (nor were likely ever to meet them again) you at least had instant access to everything that had ever happend to them – including the results of every test they had ever had.  But it doesn’t work – data has no meaning until it is turned into a story – and the more data you have the harder it is and longer it takes to turn it into a story.

And stories matter in medicine – they matter to patients and their relatives who use them to understand the random injustice of disease, it tells them where they have come from and where they are going to.  They matter to doctors as well – medical narratives are complex things, they are played out in individual patients over different timescales – from a life span to just a few minutes, each narrative having implications for the other.  Whilst we don’t neccessarily think of it as such – it is precisly the complex interplay between chronic and acute disease, social and psychological context, genetics and pathology that we narrate when summarising a case history.  When it is done well it can be a joy to read – and of course it creates the opportunity for sudden moment when you get the diagnostic insight that changes the course of a paient’s treatment.

Natural Language Generation

Turning the undifferentiated information that is a patients medical record – whether paper or digital – into a meaningful story has always been a doctor’s task.  What has changed is the amount of information available for the source material, and the way it is presented.  A good story always benefits from good editing – leaving out the superfluous, the immaterial or irrelevant detail is an expert task and one that requires experience and intelligence.  You see it when comparing the admission record taken by a foundation year doctor compared to an experienced registrar or consultant – the former will be a verbatim record of an exchange between doctor and patient, the latter a concise inquisition that hones in on the diagnosis through a series of precise, intelligent questions.

So is the AI technology that is able to spontaneously generate a love story sufficiently mature to be turned to the task of intelligently summarising the electronic patient record into a meaningful narrative? Its certainly been used to that effect in a number of other information tasks – weather forecasts and financial reports are now routinely published that were drafted using NLG technology.  The answer of course is maybe – there have been some brave attempts – but I don’t think we are there yet.  What I do know is that the progress of AI technology is moving apace and it won’t be very long before the NLG applied to a comprehensive EPR will be doing a better job than your average foundation year doctor at telling the patient’s story – maybe then we will fall back in love with EPR? Maybe…

  
On the 14th April 2003 biomedical scientists achieved the medical equivalent of the 1969 apollo moon landings – The first entire gene sequence of a human was published.  This was a phenomenal achievement and was the culmination of 12 years of intensive research – it was announced by the US President with great fanfare along with excited promsises of revolutionary advances in medicine.  We all waited with anticipation – and we waited.  Rather like the dawning of the space age – that first momentous step seemed to be followed by a quite a prolonged period of rather disappointingly mundane achievements (where are the moon colonies, hotels on mars?).  My entire medical school training and early career was filled with promises of the genetic age of medicine.  And whilst without doubt the technology of genetics has transformed our understanding of disease and created many therapeutic opportunities – the revoloution seems to have been largely confined to the laboratory and some very rare inherited genetic disorders.  The impact on most doctors (and patients) has been marginal to non-existent.  I do believe this is about to change though.

The First Two Ages of Modern Medicine

I am defining modern medicine as the era in which it becam possible ‘to do’ something to alter the course of disease and suffering.  It largely coincides with the medical profession’s mastery of pain and conciousness – allowing for the explosive development of modern surgery, and its mastery of infection – through vaccination, asepsis and antibiotics.  These triumphs of the late 19th and early 20th century brought about a rather (possibly justifiably) hubristic ‘doctor knows best’ attitude of the profession and a transformation from cynicism (just read the literature to find out what the victorians thought of their doctors!) to profound trust of society in the capabilities of the profession.  I will call the first age of modern medicine the ‘Paternalistic Age’.  Of course we eventually discovered that doctors don’t always know best, and that when confered with unreasonable trust – like all humans – doctors sometimes betray that trust.

The second age came about with the realisation that individual experts do not have privileged access to knowledge – and that true knowledge comes about through scrupulous collection of evidence, and when that process is bypassed serious harm can result.  This is best exemplified (but not exclusively) by the Thalidomide tragedy.  Another example of the consequences of unchecked, unjustifiable trust would be Harold Shipman.  Whilst the foundations of trust in the profession have not been completely undermined – there is now a healthy wariness of the claims of the profession.  The second era of modern medicine is the one I have been brought up in – it is perhaps best described as the ‘Evidence Based Age’.  It has been characterised by the ‘standardisation’ of medical care, the medicalisation of health (primary prevention – statins), increasing specialisation and a subtle shift in the powerbase in the consulting room to one of patient as consumer of medical care and doctor as informant and provider.  It has also been characterised by an proliferation of regulation as well as litigation and the practice of defensive medicine.

The two ages overlap of course – by a considerable margin – even as the third age dawns there are still doctors with unfounded self belief and patients that simply submit themselves unquestioningly to their fate at the hands of the profession.  It is also not entirely certain that the second age is always an improvement on the first.  We struggle with ‘evidence’ – it seems to change its mind, and our method of gathering it is expensive, laborious and many of the problems we need solving don’t seem to be amenable to the standard methods of evidence gathering.  This has resulted in the evidence being biased significantly towards therapeutic intervention with drugs – because that is where the evidence gathering resource lies.  We are over regulated – to an opressive degree – and we have managed to instil in our patients both very high expectation and complete dependence.  We are also conflicted – when the evidence (that we sometimes doubt) tells us one thing, our instinct tells us another and our patients have unreasonably  high expectations for something else – it can feel like we don’t have the license to do the right thing.  We end up bewildering our patients by showering them with evidence, risks and benefits – and then saying ‘over to you’ knowing full well that our patients are ill equipped to decide.

There must be a better way – and there is – but it requires the confluence of three revolutions to bring it about.

Three Revolutions

The first of these is one I have written about extenisvely – it is the information revolution as it applies to medicine and healthcare.  The revolution in gathering, processing, decision making and redistribution of medical information is just about getting under way.  However it has not even started to realise its full potential yet.

The second revolution is one I have also previously alluded to – which is the patient empowerment revolution – also just about getting underway if a little slowly.  This not just places the patient at the centre of care, it places them as master of their destiny through empowerment and education.  The medical professional task is primarily one of teaching self care backed up by judicious, co-comissioned intervention.

The third revolution I haven’t written about before – mainly because I have only really just learnt about it.    Whilst I have possibly been dimly aware of the concept of genomics – the reality of it has emerged into my conciousness in the last month as a result of two events.  The first of these was our very own consultant conference at which we were introduced to the launch of the 100,000 genome project.  The second – allied to this – was a meeting at the Institute of Translational Medicine in Birmingham where we were helping NHS England formulate a strategy for ‘Personalised Medicine’.

The Genetic Revolution Begins

So has it finally arrived – the age of genetic medicine – that I was promised as a medical student (blah years ago)?  Well not quite – and of course I don’t think that the third age of modern medicine is the genetic age that was promised.  However genetics – or more specifically Genomics – does form the third pillar of the dawning of our new age.

Returning to our space age metaphor – the 100,000 Gemone Project is the equivalent to the first manned mission to Mars.  The 100,000 people that enter the project are the equivalent to the 200,000 volunteers that have put themselves forward for that mission.  Notwithstanding that we don’t know who they are yet – they will be the pioneers of the third age of modern medicine.  They don’t quite know what they are letting themselves in for, or where in fact they are going.  What is certain is that the journey is most definately one way.

The first human genome sequence cost the US taxpayer $3 billion and took 12 years – technology has advanced somewhat since then and it now costs less than £300 and takes a couple of hours.  Thats little more than the cost of an MRI scan.  You can buy your genome sequence online – don’t ask your doctor what the result means though, they won’t know.  In fact you would be hard pressed to find anyone that can interpret the vast amount of information that is your genome.  This is where the 100,000 genome project comes in – the aim of the project is to give all that information some sort of meaning.

We are more than our genes – we are the manifestation of our genes but with a context and a history.  It is the interaction of our genes with the environment over a sustained period of time – plus the impact of pathologies and the attrition of time on our DNA that makes ‘us’.  A genetic sequence has no meaning until it is interpreted in that context.  The true power of genomics will be realised when we know how people ‘like us’ respond to environmental, therapeutic and pathological influences and the impact that genetic variance has on that.  To achieve that we have to ‘cross reference’ the vast data base that is the genome with an equally vast database that is the ‘phenome’ i.e. everything else.

The 100,000 genome project will start with recruiting people with conditions for which we know there is a genetic component either of the disease itself or the response to currently available treatments – this includes a variety of cancers and a (quite long) list of other rare diseases.  It will collect the ‘phenotype’ of these people i.e. comprehensive and structured information about individuals, their history the environment in which they grew up and live, their response to treatment and their outcomes.  It will probably do the same for their families.  It will process huge amounts of data – and it may not even directly benefit our 100,000 pioneers – much of the significance  of this information will only become clear after time and many more individuals have been recruited.  

This is a new paradigm in bio-medical research – it is the science of ‘discovery’ rather than the more familiar cycle of hypothesis testing through randomised control trial.  It imposes a discipline on the way we practice medicine – in particular the way we collect information.  It makes every health transaction an evidence creating one.  It is a model of continuous learning.  What is really exciting is that it is happening right here in the diverse, metropolitan beating heart of the country – Birmingham.

Where will it end?  From what I can see it certainly won’t end at the 100,oooth patient.  It is quite a long way to Mars…

Interpreting the Future

So the third age – is it the ‘Genomic Age’? No – although I believe the aims and design of the 100,000 genome project epitomise third age medicine.  I am going to call the third age of modern medicine the ‘Interpretive Age’.  By this I mean the future of medicine will be personal.  We will need doctors that can interpret the large amounts of information from genomics, phenomics, proteomics, theranomics and infonomics (only the last one is my invention) relating to individual patients and interpret them in a way that has meaning for the patient – and that starts with listening to the patient and understanding their context, their wants needs and aspirations (psychonomics? socionomics?).

In many ways good doctors already do this.  Are the GPs that don’t give statins to patients with a 10% risk of heart disease in the next 10 years (see Times Thursday 29th October 2015) – denying patients best evidence based care or are they practising personalised medicine?  Is it right to call someone only at risk of disease a patient?  Genomics is really simply another tool that gives an unheralded level of precision to the decision making we can make with our patients for what is best for them.  There are many tools in that box – some of them listed above – are we equipped to use them though?  I am certain that when we have have ‘precision personalised medicine’ brought about through detailed interpretation of genetic, therpeutic, informatic data, we won’t be giving 3.5 million healthy people statins.

Are you an ‘Interpretive Doctor’?
  

I have had two curious experiences as a digital citizen this week. It all started with a rather depressing article I read in BMJ last weekend. It was a ‘yes/no’ debate (a common format in the magazine) on the question of whether GPs should allow patients to email them. I found it depressing for two reasons 1) I found it astounding that we should be debating the ‘question’ at all 2) The implication that e-mail might be even a remotely sensible tool for digital access to health care.

Even Digital Doctors Don’t Change

The debate continued on twitter – it appeared to me as a casual observer – that the argument against (apparently the overwhelmingly held view – even of GP twitterers) distilled down to the following:
– GPs are inundated with patients in their surgeries so how could they possibly have time to answer e-mails from them. (The doctor as victim argument)
– Face to Face consultation is a sacred rite of healthcare delivery – any qualitative diminishment of this is a disservice to patients. (The ‘I’ve been trained to do it this way I can’t believe it could possibly be done by a machine’ argument)
– Patients will ask silly or trivial questions and we would be swamped by the worried well. (The ‘We know whats best for patients’ argument) .
– What evidence is there that on-line access reduces demand any way? (The ‘If there isn’t a randomised controlled trial I’m not going to change’ argument)
I was appalled by the narrow perspective, lack of self awareness and how patronising and patriarchal the medical profession still is in 2014. I, rather inadvisably, said so on twitter – and was hit by a ‘twitter storm’ (more of an angry gust if I’m honest) of protest from doctors – what would I know, I’m just an anaesthetist!

Patients Doing it for Themselves

So that was my first experience of an online ‘trolling’ – an important rite of passage as a digital citizen. My second curious experience I’m glad to say was more uplifting. I received an unsolicited invitation from the King’s Fund to take part in a round table discussion about ‘The Art of the Possible’ in a digital future for healthcare. This took place on tuesday night – there were a variety of people – CEOs, MDs, Academics, Community, Mental Health, Industry, DoH (HSCIC) and Patient representatives.

The session started with the absolutley captivating story from Katherine Cormack. She spoke unwaveringly of her experiences of childhood and adolescent mental health problems, the inadequacy of the services provided to treat them and of her attempts to create a solution from the inside (she worked for the NHS for a while trying to set up online help forums for teenagers with mental health issues – but had to give up because of the barriers to change) and eventually joined a social enterprise which has developed an online tool called BuddyApp which creates an online regulated self-help community for patients and therapists.

A long and fascinating conversation ensued – which I can’t divulge because we were operating under ‘Chatham House Rules’. However the messages I took away were the following:

1) There is a desperate desire from users of the health service for it to enter the digital age – they feel ‘locked out’ and rebuffed by an un-listening and un-reformable system.
2) The world is innovating around us – the NHS is being left behind
3) The NHS is a jealous guardian of patients health information and cannot see a way through the mire of data protection, confidentiality and competition law to release it back to them – although in fact there are no reasons why these should be barriers
4) The NHS is incapable of disrupting itself – it cannot release cash from things it is currently doing in order to invest in doing things differently – this was implacably conveyed by the man from HSCIC
5) Yet it is only technology enabled patient self care that has the potential to relive the inexorable rise in demand for NHS services
6) There is a stark asymmetry between the value we (the health service) think we add compared to what patients think we add
7) The NHS has the long history and deep seated culture of a public service organisation that thinks it knows best – this patriarchal culture suffuses the organisation from its civil servants and managers to its frontline clinicians.
8) Those on the inside with insight and the desire to change it are a definite minority – but they are passionate and are seeing and implementing solutions, albeit in small pockets of the service.

Some Myths about Digital Patients

The other strong message that came through is that there are some strongly held beliefs of health professionals about digital healthcare that are simply not born out by the evidence.

Myth 1 – ‘Technology is the preserve of the young and the elderly would be excluded’ – Smartphone market penetration has exceeded 90% in the UK and the fasted growing sector is the over 65s
Myth 2 – ‘The elderly struggle to use or understand modern information technology’ – It is not uncommon now on our wards to see patients young and old using this technology intuitively and effectively. I have seen patients on our elderly care wards ordering their supermarket shopping in preparation for their own discharge.
Myth 3 – ‘Handing out devices to patients will result in them being stolen’ – this is simply untrue – devices have been used in solutions for the homeless and drug addicted with no or minimal loss
Myth 4 – ‘Digital healthcare is a poor substitute for face to face and hands on consultation’ – There is a very large element of health seeking behaviour which is simply looking for trusted advice and reassurance, patients value the continuous access that digital health affords compared to the limited hours and inconvenience of primary care or the appalling experience of A&E.

A Coalition of Radicals

The most uplifting part of the evening was being able to meet and network with developers of solutions for digital healthcare (like BuddyApp), professionals from the health service that have put them to use and representatives from patient groups that have been campaigning for greater patient autonomy and self care through access to their own health record. They are a weary tribe of campaigners because they get little audience from the service they are trying to improve. However there was a clear shared vision and enthusiasm for digital access to healthcare and evidence of real progress from some innovative developers.

It is clear to me that it is this tripartite coalition – patients, third party developers and willing clinicians that will deliver the digital future of health. The only change from inside the health system that is needed is the release of patients own information back to them – and that should cost nothing. Its time to campaign for your right to access your own health information. This innovative disruption will change the NHS from the outside for ever.

Over the next 2 years many NHS Hospitals will be replacing electronic health record (EHR) systems as the contracts born out of the national program for IT (NPfIT) come to an end. They are doing so amid a noisy revolution in healthcare informatics – which is demanding that we completely reframe not just our ideas about the EPR itself but also the nature of healthcare delivery and the traditional medical model.

I have previously talked about the cumbersome desk bound IT systems that have been as much an impediment to the process of care as a source of misery for the users of these systems. Why is there such a mismatch in expectations of healthcare staff and the developers of the tools supposedly there to help them? I don’t believe we can blame the developers of the systems – or for that matter the users of them. I believe that it has come about because we have all failed to understand the true nature of modern medicine and it has taken the social media revolution to wake us up to the fact.

Transactional Healthcare

All our current systems – IT, contracting, measuring, counting and operational delivery – are designed around the notion that healthcare is a series of individual transactions, each transaction taking place under the auspices of an individual clinician (e.g. the finished consultant episode – FCE). The overriding assumption of this model is that healthcare is episodic, that between episodes we have no contact and no need for contact with the healthcare system and that each episode is presided over by a clinician that has, if not control, then at least knowledge of what is happening. It also assumes that of the information required to manage an episode of care only a proportion of it is of relevance to future episodes – and that episodes of care have largely self contained information needs.

Notwithstanding this, what a typical patient might consider a single episode of healthcare actually consists of large numbers of individual transactions often with several different organisations and several different parts of the same organisation (GP, Outpatient department, Radiology, Pathology etc.). The ‘system’ has fragmented itself – for its own purposes – and has at the same time failed to provide a reliable mechanism for the sufficient sharing of information between its different parts to give any sense of continuity – let alone impression of competence – to the hapless patient.

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The NHS far from being a single organisation is an aggregation of large and small institutions, thrown together in a pseudo-market notionally in competition with each other – with strict rules that prevent them from collaborating (competition law) and sharing information (data protection). It is designed to fail to meet the continuity challenge and the expectations of patients. It is also unsafe – with manifold opportunities for vital information communication failure, a common root cause of critical incidents and serious complaints.

This transactional model has developed out of the medical model that assumes patients have singular diagnosable diseases that are amenable to technological intervention (pharmaceutical or surgical) and that life long cure is the outcome. This is certainly the case in a proportion of healthcare interactions – but medicine and patients are changing. The vast majority (in excess of 70%) of healthcare delivery is for the multiply co-morbid patient with conditions that they will live with for the rest of their lives. There may indeed be episodic deteriorations in their condition, that result in (expensive) episodes of highly technological healthcare – these are however often both predictable and avoidable manifestations of a long term condition for which there is a continuous healthcare need.

Social Healthcare

A new medical model – that fits the needs of 21st century patients – is emerging in the era of social networking. Social Healthcare – this model assumes that the patient has a continuous need for health intervention and that this is delivered by a network of providers that the patient invites in to their ‘health space’. A long term condition demands a multitude of interactions over a sustained period of time with many providers. Our current system fails to ensure that those providers interact with each other over the same patient using the same information as it cannot guarantee that they ever have access to the same information (or even know that they are looking after the same patient). In the social healthcare model the patient is the guardian of all information about themselves. Their information sits in ‘the cloud’ but they hold the key to its access. Over time they build a personalised health care team who have access to their cloud data and can ‘talk’ to each other about the patient through his or her ‘health space’. The patient can source information about their condition, ask advice or consult through the portal to their health space at any time of day or night. The portal allows for direct consultation through a skype like interface. Even more powerfully the patient can consult with other patients who have the same conditions. A self supporting community emerges that can provide advice, support and shared experience – on a continuous basis. “It’s like having a waiting room conversation with 1000 other people – just like me”.

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This new model has the potential to have a powerful enabling impact on patients. It subverts the traditional hierarchy in the health transaction, puts all providers on an equal footing below that of the patient – who becomes the master of their own information. Networks of expert patients start to generate new kinds of knowledge about the nature of disease and the impact of interventions – crowd sourced evidence creating medicine. Patients have the power to choose who contributes to their health space – based on the value they add to them as individuals.

Preparing to be part of the Crowd contributing to the Cloud

What does this mean for providers of health care that are in the process of renewing their informatics systems? What does this mean for me as an individual doctor? The truth is the system described above doesn’t yet exist – there is nothing yet that will force me as a doctor to change my clinical practice in such a way as to make myself available through the cloud to individual or groups of patients on a continuous basis. There is nothing yet that will force the hospital that I work for to make available all the information it holds about patients to patients through a cloud portal – or share that information with other providers of that patient’s choosing. Nothing yet – but it is coming…

Third party providers of patient centred health portals are are emerging – from a variety of premises and care models – but are converging on something that looks similar to the ‘social healthcare’ system. Patients like me, Patients Know Best, Health Fabric and Skype Health are all examples of emerging technologies that will deliver the vision. And they are selling their wares not to doctors, healthcare institutions or commissioners – they are selling them to patients.

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What this means then is that the systems we purchase or develop will need to have the ability to talk to these providers, transfer information, support voice and video links. We will have to think through how the information outcomes of healthcare transactions will be recorded in a way that can meaningfully sit in a patient’s cloud – shareable with other providers and understandable by patients.

What this means for doctors is a shift from practicing intermittent transactional healthcare – to developing a personal online continuous relationship with our patients and being part of and interacting with the crowd of providers that are also caring for them.

Welcome to the future of medicine – are you ready?

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In a book chapter I wrote on the subject of information management in critical care, I concluded that one of the most important challenges for this generation of doctors is the transfer of clinical information management from paper to electronic systems. So far we have failed that challenge, the vast majority of clinical information is still being recorded and managed (rather poorly) on paper. Those parts that are managed electronically are, in general, still cumbersome, bespoke systems that serve functions other than the delivery of clinical care far better than the needs of doctors, nurses or even patients. As a result a lot of these systems are at best grudgingly tolerated, often despised and sometimes even avoided altogether. The majority of doctors, with the exception of the minority enthusiasts, have withdrawn from the conversation on development of information management systems (or even been left out altogether) because it has been seen as a technological challenge rather than a clinical one. This is wrong and has to change because the way we manage clinical information is a crucial enabler for radical change in health care delivery. If doctors fail in this challenge we will find ourselves marginalised and obsolete in an ‘innovatively disrupted’ health economy.

Early Adopters

There is, of course, some history here which partly explains our current situation. Electronic clinical information systems have been in existence for over twenty years. The early years of the development of these systems was dominated by the technological challenges. The sheer volume and complexity of information that is collected in the course of delivering clinical care was a challenge when the cost of electronic storage was high and networking infrastructure not well developed. Taming the complexity of the information – codifying it and structuring it so that it could ‘fit’ in a conventional database – was not only difficult but also met with resistance of professionals as it constrained practice and the PC / workstation became a barrier between doctor and patient. Despite these challenges there are examples of hospitals and hospital systems that showed the world how it could be done (Burton Hospital being a notable example in the NHS) and also how it could go wrong.

The Lost Decade

If the nineties was the pioneering decade for clinical information systems then the first decade of this century can only be characterised as the ‘lost decade’ – whilst the Internet flourished and the age of distributed, personalised, world-in-your-pocket computing dawned – hospital IT systems remained desk-bound, cumbersome, inflexible, centralised systems. The need for information sharing was misinterpreted as a need to provide a single solution for all. A strategy that has cost billions, failed to deliver and diverted funding and more importantly the engagement of the medical profession (it was often doctors with IT skills that where the pioneers of the early adoption period) away from user and patient centred solutions.

A Tablet Ushers in a New Era of Medicine

Technology is no longer the problem – storage is cheap and abundant, networks are reliable and fast and devices are powerful, intuitive and mobile. Data management has transformed as well. XML allied to sophisticated search algorithms means less taming of information is required, the structure of the ‘database’ need not trouble the user any longer. Cloud technology means that information can be kept absolutely secure whilst not compromising the freedom of permitted users. The technology really has come of age and has surpassed the specification required to deliver clinical information management that truly serves the needs of patients, doctors and managers. Mobile devices like the iPad can give doctors both tools for information gathering and the tools to access it when it is needed without the technology getting in the way of the transaction with the patient.

Paper, Paper Everywhere!

But we are still using paper – tons of it. Medical records are stuffed with cardboard folders bursting with, mostly useless, pieces of paper. The information is locked away, unstructured and inaccessible – every request for information (and there are lots) is a mountainous struggle, consuming hundreds of man hours to extract it. The functions of the paper medical record as care coordinator, communicator, clinical process manager, monitor and legal witness are all conflated and result in an extreme precautionary approach to the retention of information which completely subsumes the probably more important function as informant almost as important (and often more informative) as the patient themselves.

It’s the Information Stupid

It’s time for the conversation to move from the technology to the information. We must focus on the type of information we gather, how we gather it, what we need and when we need it in order to deliver safe effective care. So much duplication and iteration and re-iteration of clinical information has evolved as a defence against the in-accessibility to information. Most patients I have met are astonished at the number of times they are asked the same questions over and over again even within the same clinical episode – they see the duplication and fragmentation that we as professionals miss.

The care we give our patients is complicated and messy – partly because our patients are complicated and inflict on us huge variance in presentation, severity, comorbidity and response to treatment. That is the nature of medicine and what makes it so all consumingly interesting. But we make life exponentially more difficult for ourselves by imposing our own variance in practice and reliability on this already unpredictable background. Doing it differently every time, sometimes even changing our mind half way through results in variance on variance which is the definition of chaos. Chaotic medicine results in unpredictable, usually poor, outcome and huge waste – and is bad medicine.

There is an answer to the information problem which also solves the chaos problem and results in not just better care but dramatically better care. Healthcare organisations that adopt this solution are not only better than their peers they are exponentially better. The solution is the key to delivering reliable care and it is the Clinical Process Model. This will be the subject of my next blog.