An interview with electronic medical records pioneer David Stables
David Stables, one of the pioneers of electronic patient records, was a newly qualified GP when he first saw for himself the profound potential for health data to transform outcomes – and save lives. It was 1984, and a senior partner at his rural Yorkshire practice invited him to put a medical query to the computer he had just bought for £15,000. David typed in ‘chest pain’ – it was the first time he had ever used a PC. The computer came back with ‘when do you get the chest pain?’, surprising David who had expected it to ask where the pain was felt. He realised that it was the better question. Answering with ‘walking up a hill’, or ‘after I’ve eaten’, or ‘in cold weather’ would indicate angina and a risk of heart attack far better than trying to describe the location of the pain.
“Ninety nine per cent of people with chest pain have got something else,” says David. “I said at the time ‘this is fantastic’.”
David had glimpsed the future.
That early computer had been programmed by his senior partner, one of the group who identified the new diseas ‘farmer’s lung’, and while its diagnostic capabilities were very obviously limited, its potential to interrogate data to support doctors’ decision-making was obvious. Now all they had to do was type in the sum total of all medical knowledge and the notes for every single patient, living or dead . . .
I want every citizen in the UK to have access to a personalised healthcare management system of their choice.
Understandably, that was a tall order. David taught himself to code and he and his practice partner set about building a system that they first sold to neighbouring GP practices before winning NHS contracts. The business grew into EMIS, one of the principal suppliers of primary care IT systems with software used in the majority of UK GP practices.
David parted company with EMIS, disagreeing with the direction the publicly listed company was taking. For him there are new challenges to be met with new capabilities in technology and data.
Since his days as a newbie GP, the internet has been busy gathering the sum total of medical knowledge and the mountains of patient data grow by the day.
David identified a different problem – a system in which GP and hospital system providers were tied to their organisations and user bases, which led to conservative attitudes and restricted practices.
“I moved on from stopping doctors making mistakes and set myself another objective – I want every citizen in the UK to have access to a personalised healthcare management system of their choice. Something that helps them manage their own health.”
It was this mission that led David to set up Endeavour Healthcare Charitable Trust, with a £5million endowment from his own pocket.
“To make this happen, at the very least you have to be able to access and synchronise your health service data. Therein lies the problem – the health service data is locked in silos and all in different formats. So the first thing you need to do is make sure all the health data is connected.
“This is the sort of thing the NHS should be doing. But they are struggling. It’s a structural problem.
Commercial people should be able to solve it, but they can’t because there is no decent business model.
“So I decided to set up a charity to do it instead. If there’s no business model, then I might as well set it up and give it away.”
David pulled in talent from his previous companies to start solving the problems that lack immediate commercial appeal, making available the resulting open source solutions.
The over-arching philosophy is that data can generate life-saving insight. By freeing data from its silos and letting it flow, says David, patterns emerge that are impossible to recognise at the sharp end of healthcare delivery.
“There are things that individual doctors with an individual patient in front of them can’t see. But if you put your data together – some entered by your GP, some by you, and some in hospital – and run algorithms on it you can detect these things and you can save hundred of thousands of lives.”
Making sense of it all
The sheer volume and diversity of data available today – not just medical records but consumer apps and wearables – seems to make doing so essential rather than desirable. But while consumer health, fitness and lifestyle apps proliferate, the ability to use data from medical records seems stuck in the past. More and more patients can access their records, but what they get can hardly be described as ‘user friendly’.
“It was never any use just seeing your medical records,” says David. “What you see is the GP’s view of the data which is not a lot of use to you because you’re not a GP. You need that data bringing in and being interpreted in language you understand.
“That data is well structured. From a patient’s perspective you could have a graph of your blood pressure, for example. It might tell you that since you lowered your dosage of pills your blood pressure has gone up. If your legs ache since increasing your dosage, the system might suggest a different intake. You often don’t need a doctor to tell you these things.
“The computer can operate on the data in hugely different ways. It can present something a clinician can make sense of but also in ways that you can make sense of, too.
Simplicity is hard to do
So, with so much possibility, why does progress seem so impossible? Why does it take the formation of a charity to grease the wheels of innovation? The answer seems to be the NHS. Even with the best will in the world, it is a vast, complex organisation, comprised of many smaller organisations. It is a body in an almost perpetual state of crisis.
“It’s technically simple, but doing it is incredibly hard,” says David. “It means a change in culture in the NHS – which is changing. It means pushing through the supplier protectionism that exists and breaking down provider barriers.”
“It actually doesn’t help a GP much for you to get access to your data. That’s the problem – they’re not incentivised. A whole series of things need to line up to make it happen and the NHS itself is trying to break the back of this.
“My view is you have to free the data from the systems. You have to reuse that data in different ways. You’ve got be able not only to get the data out into your own personal record but you have to be able to sync it.
“This will happen. Change happens when you get the leading edge. We’re very close to getting the leading edge – closer than five years ago when I started this charity.
“All of this is positive but there has to be that demand. We are getting there. NHS England gets it. [Health Secretary] Jeremy Hunt has just thrown another £80million at a bunch of pilots to do exactly this.”
Whatever the pace of institutional progress, it is advances in technology that have cleared the ground and created the current climate for innovation that puts real solutions within reach.
“The cost of data storage is a thousand times lower than it was ten years ago,” says David. “The cloud exists because of that. The cost of processing is a tenth of what it was ten years ago. The underlying tech has facilitated the software to do this.
“But we’ve still got real problems with data being held in different formats and systems.”
NHS politics aside, the practical bottleneck is all too familiar – interoperability across so may disparate systems. David describes two prevailing schools of thought to solving this problem.
The first is to somehow force suppliers to change their systems to be interoperable with each other. While that would be the ideal, with all machines speaking the same language, it faces practical problems including the fact that suppliers tend to be locked into five or ten year year contracts. To that end, David and two colleagues set up InterOPEN, a collaborative forum to “accelerate the development of open standards for interoperability in the health and social care sector”. However, he admits that incentivising the larger suppliers to actually so something has been a challenge.
The second approach is to get the data out from systems in whatever form possible and then map it to standards. Suppliers will begin to update their systems in order to make use of greater varieties of available data and add value to their offerings.
This is now where David feels the progress will be made, although it will be hard won.
“Around the country there are initiatives that are saying ‘get the data and then get interoperable’. Accept that it’s a bit mucky in places and we’ll need to clean it up along the way. Mucky coming in but clean going out.”
Where will progress come from?
Health services are changing, then, both culturally and technologically. Individuals are becoming more empowered, predominantly through consumer apps and services but also through slowly-improving access to their medical records data. Technology and data can save the NHS millions while improving services and, at the same time, help people live healthier lives and improve patient outcomes. So, will we arrive at something like patient centricity? Will it be a by-product of a top-down drive for more effective and efficient healthcare service delivery? Or bottom-up by individuals becoming the only feasible point of integration for an ever-growing gamut of health data?
It will be a large part of both, says David.
You need an absolute clear-cut, citizen-centred approach, absolutely
“If you try and fix this problem using the health service paradigm it will fail. If you try and fix it from the patient centric paradigm it will fail. If you approach it from a compromise in middle you will fail.
“You need an absolute clear-cut, citizen-centred approach, absolutely, and an approach from health services that says we have to facilitate that in a way that advantages the service also.
“You end up with a compromise as a result of those two extremes working toward the middle. Instead of saying let’s fudge it in the middle to start with, you’ve got to let the patient centric stuff flow and you’ve got to let the health service get on and do what it’s got to do.”
A lot of people say it’s all about the patient and doc says its all-out docs. It is about partnership but not all of the time. You don’t see a doc all the time.
“The only way forward is to empower the citizen directly.”