Is going paperless losing sight of the goal of shared data?
For the past few years, there has been a big drive within the NHS to ‘go paperless’ as a way of becoming interoperable and achieving a first-rate digital delivery of care. To me, that seems to be the wrong priority. Or rather, the health and care systems have lost sight of the real problem we’re trying to solve. Paper alone was never the problem.
When you want to reach a state of shared data and you start with the very simplistic idea of being paperless, it results in exactly what has happened. Different organisations dashed to scan their paper records, and ended up with, well, electronic paper. It still isn’t highly accessible. You can’t process it. You scroll through hundred-page PDFs to access the right information. It’s difficult to keep up to date. That’s the problem, and ‘paperless’ is the wrong answer to the question of how health and care becomes truly interoperable with easily shareable data. What you need to do is put the patient back at the centre of things, and make that your guiding light.
We need to consider: what information do we need at the right time, in the right place, so we can make decisions that will result in effective care? Ultimately, at the end of this goal, we will likely be paperless. That shouldn’t be the priority, however. The priority is to improve patient care, and a by-product of reaching that goal will be the digital capability that allows for the free movement of data.
Patient-centric care is the goal
The true goal of shared data, to me, is that patient-centric way of thinking. The only way you can treat a patient effectively and safely is if you have all their information in the right place, structured in the right way.
Clinicians need the information that’s necessary for the patient in front of them, and who is anyone to say what the clinician won’t need at the point of care? You might insist that they don’t need to see the patient’s social care or mental health record, but that might be relevant. It’s key to have easy access to all of it, because that will result in a full view of the patient and excellent care irrespective of what data is where.
Are we on the right path to a system of shared data?
We are on ‘a’ path, there’s no doubt about it. But it isn’t the most efficient path. This existing habit of using large, monolithic systems to manage vast quantities of data in many different silos is not helping the case for shared care. It could even be a massive distraction. It sucks in huge amounts of funding and diverts the organisation’s attention towards it for years at the same time. It’s a longer, more costly way of reaching the healthcare system’s interoperable goals.
So, what can be done? Having a better blueprint now would enable health and care to get to an interoperable state faster and cheaper. It might not tick every box for every organisation, but the patient is the priority above all. There must also be the right leadership at the centre of that blueprint which would combine a set of mandatory standards with a common infrastructure. A lack of leadership will slow things down, and the wrong leadership could have a similarly negative impact.
Historically, NHS Digital - and its previous names over the years - has had initiatives in this area, to develop standards for this, and some great work has been started. But two things have happened: the first is that this work was never completed, and the second is that there has never been the leadership to enforce it. NHSX was the new hope, but whether it has lived up to expectations is the question, after a relatively slow start due to different pressures placed upon it, from political to the pressure of big suppliers and lobby groups.
The NHSX Digital Academy is helping to educate CIOs on the ‘art of the possible’, and all CIOs should aim to attend it. We need to tackle legacy ways of thinking and create a solid standard to aim for. Once an industry standard is reached, external supplier support becomes possible, and that is exactly what’s needed. I think we’re getting there steadily - we all know that data silos are not helpful to clinicians or patients. That’s why at Future Perfect, we’ve been working on Panacea, a suite of solutions that can illuminate the entire patient pathway, with all of their data flowing unhindered.
In addition to that kind of leadership and knowledge, we need a shift in the way we procure systems, and what standards there are for the systems that are bought. Suppliers should have to conform to a standard of being interoperable as a requirement. And this should be on a national scale.
Data without borders
The NHS, in England in particular, is quite a big and unwieldy thing. It’s quite difficult to manage the system as a whole. The more ICSs you have, the more borders you have between them, and there will always be care providers and patients that straddle those borders (such as regional or super-regional hub-and-spoke specialist services). Individual ICSs can’t address that. True openness and interoperability can, and will. Borders should become irrelevant, with free movement of data across them.
Supporting shared care and interoperability is going to take time - aiming for being paperless is only a tiny proportion of what’s needed, and as I said above, it shouldn’t be seen as the single solution to the challenge we face. It should be a by-product of a massively improved way of working. The true goal of shared data should always be enhanced care for the patient as an individual with a life that spans many different services and places of care.
Long haul Covid, the brain and digital therapies
It is estimated that around 10% of people who get Covid-19 develop long haul Covid, a debilitating condition that can last many months and cause breathlessness, exhaustion and pain.
Research is underway to find out who is more likely to get it and how to treat it. Here neuroplasticity expert and owner of Harley Street Solutions in London Ashok Gupta tells us how the condition affects the brain.
What is long Covid exactly?
Long Covid is when patients who have experienced Covid-19 go on to have continuing symptoms for weeks and months afterwards. These symptoms can include breathlessness, exhaustion, brain fog, gastric issues, pain, and post-exertional malaise. It is estimated that around 10% of Covid-19 infections may result in developing long haul symptoms, and in the USA, this may be affecting over 3 million people.
How does it affect the brain?
Here at our clinic, we hypothesise that it is due to a malfunction in the unconscious brain, creating a conditioned response that keeps the body in a hyper-aroused state of defensiveness. At the core of this hypothesis is the idea that we are here because our nervous system and immune system have evolved to survive. We are survival machines!
When we encounter something such as Covid-19, the brain perceives it as life threatening, and rightly so. And in the era of the pandemic, with more stress, anxiety and social isolation, our immunity may be compromised, and therefore it may take longer for the immune system to fight off the virus and recover.
If the brain makes the decision that this is potentially life threatening and we get to the stage where we’re overcoming the virus, a legacy is left in the brain; it keeps over-responding to anything that reminds us of the virus. Even if we’ve fought off the virus, the brain will react in a precautionary way to stimuli reminiscent of the virus.
The brain may get stuck in that overprotective response, and keeps stimulating our nervous system and our immune system, just in case the virus may still be present.
What symptoms does this cause?
These signals cause a cascade of symptoms including breathlessness, extreme fatigue, brain fog, loss of taste or smell, headaches, and many others. And these are caused by our own immunes system.
In the case of long-haul Covid, symptoms in the body get detected by a hypersensitive brain which thinks we’re still in danger. The brain then chronically stimulates the immune and nervous systems, and then we have a continuation of a chronic set of symptoms.
This isn’t unique to long-haul Covid. Many patients develop chronic fatigue syndrome, sometimes known as “ME”, for example, after the flu, a stomach bug, or respiratory illness. Covid-19 may be a severe trigger of a form of chronic fatigue syndrome or ME.
How does long-haul Covid affect mental health?
Anxiety is a very common symptom in long haulers. It can be frightening to wonder about what may be happening in your body, and what the prognosis is going to be for one’s long term health. Reaching out for support for mental health is crucial for long-haulers.
How does neuroplasticity treatment work for long-haul COVID patients?
We have been working with patients for two decades with a brain retraining programme using neuroplasticity or “limbic retraining.”
We believe that through neural rewiring, the brain can be “persuaded” that we are no longer in danger and to come back to homeostasis. But to be very clear, we are not saying it is psychological in any way, but we believe there are novel ways of accessing the unconscious brain.
We recently worked successfully with a 56-year-old male with long-haul Covid, who prior to contracting Covid-19 in March of 2020 was running half-marathons and cycling, but afterwards he struggled to get off the sofa for months. Within 3 months he’s now back to 100% and running half marathons again.
At our clinic, we train the patient to be able to recognise those subtle unconscious danger signals on the periphery of consciousness. This, coupled with supportive techniques and the natural hallmarks of good health such as sleep and diet help prepare the patient to respond to perceived threats that might trigger the response.
The natural state of our brain is to default to protection. The brain prioritises survival and passing on our genes to the next generation, over any other impulse. It cares more about that than you feeling healthy and well. Protective responses are evolutionary, and are the right thing for the brain to do – it’s survival.
What digital therapies or apps are proving effective at treating long-haul Covid?
It seems that long haul patients are availing themselves of many online therapies and services, including meditation apps and wellness websites. We have an online neuroplasticity “brain retraining” video course called the “Gupta Program” which hosts 15 interactive videos and many audio exercises. This is proving very popular with long haul patients, and we are currently conducting a trial to test the effectiveness of this therapy.
What is the danger of leaving long-haul Covid untreated?
The longer it goes untreated, we hypothesise that it may become more entrenched in the brain, and become chronic in the longer term. Therefore we advise all patients to get help and advice as soon as possible.