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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1 Comment

  1. Hi Roger,

    A thought provoking, insightful and optimistic article. What you describe does exist in working prototype form – and it is a prototype for a good reason – because we are not yet able to write a full specification for such a system.

    The problems that you outline with existing electronic health records (EHR) is that they have evolved from stage-focused information systems (transactional systems as you describe them). A radiology information system (RIS) is a good example of a stage-focused IT system. One problem that plagues such systems is that they were never designed to work together seamlessly. The fact that an unique NHS number that identifies individuals is a relatively new innovation is actually a reaction to the problem of fragmentation. There is still no unique ‘job number’ that identifies a referral and that links all the sub-tasks that are required to deliver what is required. A modern commercial organization (e.g. Amazon) could not function without an unique job number – and we take that for granted now.

    Information-flow systems can only be designed after the system it is required to support has been designed.

    And there we have a more fundamental design flaw – the healthcare system is actually a sickcare system – what is colloquially described as a ‘scraping the burned toast’ design. The system is only accessed when sickness “strikes” – be it physical or psychological. So, it is no surprise that the existing IT systems are designed as they are … because it is in the interest of the providers of sickcare to be secretive with patient data – especially in a commercially competitive context.

    So as you perceptively illustrate the paradigm shift is starting to happen at a more fundamental level – and that is being enabled by the rise of social media and easy and fast access to cloud stored personal health data.

    Two shifts are happening:

    a) Individuals are taking ownership of their health related information – I do not call them patients because they are not ‘sick’ – and their purpose is to stay healthy and avoid sickness. And that means avoid the fear of illness too – a fear that is often whipped up by those who benefit from mitigating the fear.

    b) Individuals carry more powerful information processing technology in their pockets than most organizations have on their desks – in the form of modern smartphones, tablets, phablets – and this mobile technology and the software available for it is developing very fast.

    One of the obvious market for ‘apps’ is healthcare – and personal health records (PHRs) is a massive growth area – which means trying to pin it down, control it and ‘standardize’ it fruitless. Individuals will vote with their wallets – that is the true meaning of ‘market forces’.

    Imagine what will happen when individuals have 24×7 access to accurate, reliable, comprehensive, evidence-based, personalized, healthcare advice that allows them to stay healthier for longer? A smart e-doctor in your pocket. What will be the future role of clinicians who sit waiting for sick people to queue patiently for their pearls of out-of-date wisdom?

    So I agree with you – if the healthcare does not grasp the opportunity with both hands and learn to re-design itself as fit-for-the-future the it will become progressively irrelevant.

    The key skill is “design” – not just of IT systems but of systems in general.

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