The United Kingdom’s publicly funded healthcare system – the National Health Service, or NHS – often ranks amongst the top 10 health providers in the world. It’s a vast organization – the biggest employer in Europe, with 1.3 million staff who deal with almost 1 million new cases every day.
But more than 70 years after it was created, is the NHS still fit for purpose? Technology offers key solutions – so why isn’t it being embraced more quickly?
One very senior figure in NHS digital transformation, who agreed to talk to Transform on condition of anonymity, insists that a fractured system – and a fear of change – can, and must, be overcome.
What first comes to mind when you think about the technological transformation of healthcare?
The ability of patients to access their own data, drive their own healthcare, and get some of their diagnosis and therapeutics digitally. All of those things are totally within the bounds of technological possibility.
Why isn’t that happening? What’s getting in the way?
Several things. The UK has, potentially, an extraordinary longitudinal data set, birth-to-death for a genetically diverse group of patients, all held by a single provider: the NHS. But in truth, that data is fractured. The NHS is lots of separate organizations, and getting it together is complex.
The second thing is, I’m not sure the incentive structure in the NHS lends itself to providers investing in this sort of [technology] because the efficiency and quality benefits don’t always accrue to the person or organization that holds the budget. On top of that, there are some well-founded concerns around privacy and digital exclusion; and there is still a nervousness in some quarters about changing the models of care.
Also, there’s also a good amount of snake oil, an awful lot of big claims out there, many of which don’t stand up to scrutiny. It was really interesting during Covid that loads of people developed different technologies to diagnose Covid using AI, none of which really proved effective. I had a friend who was investing in a skin app to diagnose complex skin conditions. He looked at 100 companies, of which one or two really did the things they said they did.
Were they jumping on a financial bandwagon? Or is it just genuinely hard to get the technology right?
It’s not fraud. It’s the same misguided optimism that inhabits a lot of different bits of the tech sector. You have lots of brilliant innovators and entrepreneurs who are passionate about their technology. But whereas in something like retail, or lots of other sectors, if you have enthusiastic entrepreneurs over-claiming what their product can do, it’s sort of forgivable, and ultimately, not too damaging. In medicine, the bar is much higher.
You talked about fracturing. Is this a broken system?
I don’t think it’s broken. But the best way to look at it is, the NHS is 10% of the UK economy. It has a bigger GDP than Greece. So, if you said to the whole of Greece, “We want you to use the following technical and semantic standards to describe everything you do,” you can imagine that would be quite a complex task.
The NHS is literally made up of thousands of autonomous organizations, and it’s very tempting to sit outside of it and say, “All it needs to do is X, Y or Z.” I’m very, very wary of that. If you were talking about [retailer] Tesco, I think it’d be fine, but the NHS is just way too complicated and filled with organizations that value their autonomy – filled with clinicians, whose first loyalty is to their patients and to their own clinical judgment. Historically, when someone tries to come in and “get a grip,” in terms of trying to instruct the system in what to do, it doesn’t end well. There are lots of examples of this, including the famous national program for IT, which was canned when it had lost something like 13 billion British pounds [US$14.9b].
What were you trying to do, that you hoped would make the system more digitally effective?
There were three things. Our work was broadly in the categories of digitize, connect, and transform. They’re all fairly self-explanatory, but the three things I think I’m proudest of, or the key elements of focus, were as follows.
First, we needed a platform for citizens to drive their own health needs. When I started, the NHS App had been stuck for some time at 2m users. That’s nice, but it’s not game-changing. One of the benefits of Covid was that we built Covid Pass in a couple of months. For obvious reason, people flocked to download it, and we ended up after just a few months with 27m users – well over half the adults in England. That suddenly became a massive platform for changing how healthcare is provided.
Second, at the start of the Covid crisis, we brought in more partners and quickly put together the NHS data store – a kind of aggregation of data from across the system. This meant the crisis could be run according to actual data-driven needs, rather than anecdotally, or [based on] who was shouting loudest. That had the wider impact of making sure that people understood the value of data. It was not very long before every crisis meeting at NHS HQ started with a look at the dashboard – that was quite a profound shift.
Finally, we wanted to get data-sharing to work better. The NHS is divided into 42 integrated care systems. We started with perhaps half of those having shared-care records – essentially, systems that allowed different records to be shared across different care providers. By the time we finished, there was 100% coverage and there are, across the country, some really brilliant examples of data-sharing both for direct care and analytics research.
Some of the data can be used more widely, but there’s real public concern about the wrong people getting hold of the data. We have to do a better job of persuading people that they don’t have to be nervous about how the NHS deals with their data.
What is the future that you want to see for the use of data?
Ultimately, I think it needs to be able to flow between care settings – no question about that. But there are technical and legal issues.
One of the biggest issues is the cultural question. The [NHS] system rules had become very complicated, and the safest thing to do was not to share data, because people always had the fear of God put into them about what would happen if they shared and something went wrong. So, possibly the single most impactful thing our team did was actually a very small piece of work: right at the start of Covid, we published a half-page guidance note to the whole system that basically said, “If you are a clinician looking after your patients, and you are sharing data, and are acting in their interests and in good faith, then there will be no enforcement action taken against you.”
And that electrified the system. People started using the technologies that were there to be able to do the things they could have done, technically, but felt legally or culturally obliged not to do.
Is there real potential to solve that, and for data-sharing to be truly transformative?
Yes, but there are no simple answers – this is a very complex system.
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