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Revolutionising the patient experience
Ben Moody, head of health and social care, techUK, analyses the self-management of diabetes, and how technology is advancing NHS care
Given the myriad pressures on the NHS, the multi-billion pound P2020 digitisation project is understandably under increasing scrutiny. Issues such as waiting times, finance and staffing dominate the reasons that people give for dissatisfaction with the NHS and the temptation for politicians and public servants can be to focus on short-term gains in those areas. But investment in technology not only has the potential to improve health outcomes - it is also a vital part of the solution to those fundamental issues.
I spent the best part of the 2010s (that decade with no name) working in diabetes charities, most recently focusing on technology and the NHS for the type 1 diabetes (T1D) charity JDRF. There is perhaps no better health condition for illustrating the power of technology than T1D - so I’ll use that condition here to show how tech can help in a wide range of areas.
For context - T1D has no known cause or cure. It often develops in children, sometimes before they reach a year old, but diagnoses peak between the ages of 10 and 14. That said, more people get it over the age of 20 than below - Theresa May’s pancreas decided to stop producing insulin in her 50s. It’s a condition that can affect any one of us at any point and there’s nothing you can do about it. Once you have it you have to take insulin every day for the rest of your life, regularly measure glucose levels and carb count every meal. It has a great burden on individuals, their families and the health service. So how can tech reduce this burden?
Quicker, more accurate diagnoses
Let's start at the beginning. If T1D isn’t discovered early it can lead to diabetic ketoacidosis (DKA). Harmful substances called ketones build up in the body, which can be life-threatening if not spotted and treated quickly. Yet type 1 diabetes is often misdiagnosed as type 2 diabetes or not diagnosed at all. In fact, 25 per cent of people with T1D are in a state of DKA at diagnosis, often rushed to hospital in an ambulance. Earlier diagnosis would get people on to insulin earlier and avoid DKA.
Whilst no-one is advocating swapping qualified health professionals for robots, intelligent symptom checker apps can be easier to access and offer early warnings of what your symptoms could be. Groups that are known to be reluctant to visit doctors could be alerted to the likelihood of a more serious problem whilst simply using their mobile phone. Technology can also help to direct people to the right part of the health service, for faster diagnosis, reducing unnecessary tests and hospital time.
Transforming patient services
Technology has hugely improved the way that people transact with a whole range of services - reducing laborious tasks and environmental waste, providing quicker, better levels of service and allowing us to get on with more interesting things. The Nuffield Trust estimates that there are around a million consultations in General Practice every day.
In January 2015 NHS England reported that 91 per cent of patients are now registered with a practice that offers online booking, but only 6.5 per cent of patients actually use the service. The cost of the patient and the professionals’ time in booking these appointments in person and over the phone - with confirmation letters posted afterwards - must be huge.
For people with long-term conditions like T1D this problem is exacerbated, due to the sheer number of healthcare professionals they will need to see. In any given year they are likely to pick up more than a dozen prescriptions, have any number of blood tests, have a review with a diabetes consultant up to four times a year, foot checks, a retinal scan and so on. For most people this involves a mess of paper, multiple visits, different institutions and no consideration of the effect on their ability to work/study/parent etc.
The future iteration of NHS.UK should fix this. There are plans afoot for NHS.UK to become the one stop shop for health services that your online banking can be for your finances. A simple portal, backed up by scheduling software should allow more coordinated care, with appointments scheduled to fit in with life not the other way round. Changing appointments could be much easier, reducing the waste of countless letters and the wasted time of both patients and professionals.
Diabetes UK estimates that 99 per cent of diabetes care is self-management. For all of the talk about wearable devices, their application to the general public has largely been restricted to leisure and fitness. But for people with health conditions like T1D, wearable technology can be life changing. Wearables can be hugely important in helping people to manage their own condition, but people often struggle to get devices funded on the NHS. Insulin pumps have been around for more than 20 years but uptake in the UK is still much lower than in other countries.
More recently, continuous glucose monitors such as the Dexcom G5 and Abbott Freestyle Libre have proved to be life changing for people with T1D, and there are more than 20,000 Britons self-funding the Libre alone. The Five Year Forward View is committed to ‘accelerating the quicker adoption of cost-effective innovation - both medicines and medtech’. Whist devices need to be assessed on their individual merits, the numbers of people willing to self-fund these devices at a cost in excess of £1,300 per year speaks volumes.
And as companies like Medtronic and Big Foot Biomedical begin to link pumps and CGMs, combining them with algorithms that calculate the right dose of insulin at the right time, we are beginning to see the true potential of type 1 technology - the automation of insulin delivery. These devices are just coming to market and could present the biggest advance in treatment since home blood glucose testing began.
Peer support can also be of great value in helping people to self-manage their condition, without any cost to the health service. The vibrant online T1D community meet regularly online for ‘tweetchats’ and there are lots of regional Facebook groups. They share experience, advice and offer support. For a condition that affects roughly one in 160 of the UK population this can be extremely powerful as parents and children often won’t know anyone in the same school who shares their condition.
The power of data
The digitisation I have described - of diagnoses, interactions, devices and so - all produces a huge amount of data. This data can be extremely useful in improving care. Diagnoses data can be used to spot clusters and patterns. Data comparing interventions and outcomes can be used to plan care better. Data from an individual’s wearable device can greatly enrich the quality of an appointment with a Consultant. And all of this data can be useful for medical research.
This all depends on the ability of data to be shared across different devices and care settings.
techUK’s Interoperability Charter brings together more than a hundred NHS suppliers committed to principled data sharing and the benefits it can bring. We will continue to work closely with the NHS as it looks to make interoperability standard across NHS systems.
And all of this will save money
The real financial cost of long-term conditions like T1D comes from treating complications (including kidney failure, nerve damage, stroke, blindness and amputation). The cost of these complications, which are often avoidable, is expected to almost double by 2035.
Providing people with the digital tools to manage conditions like T1D would help to establish a new, healthier and more affordable relationship between patients and the NHS. And by keeping people out of hospital it would also alleviate the waiting times, financial pressures and staff capacity issues that people describe as their main reasons for dissatisfaction with the NHS.