Ewan Davis finds much to be celebrated in Matt Hancock’s new vision of NHS digitisation. But will it actually serve to fix the data fragmentation and lock-in which has been problematic for so long? On that, he suggests, the jury is still out.
I’m a cynical old bastard and have read a lot of documents in the long line that preceded “The future of healthcare: our vision for digital, data and technology in health and care”, Matt Hancock’s initial tech strategy published earlier this week.
I approached reading this policy paper from the health and social care secretary with the same thought as that of the bowl of petunias as it fell to certain destruction in Douglas Adams’ The Hitchhiker’s Guide to the Galaxy: “Oh no, not again”.
However, there is much in this document to be applauded, not least its publication as a beta version which explicitly recognises the need to iterate and improve.
The devil as always is in the detail, but before descending into that I’d like to step back and look at the problem I think this vision is trying to address.
Health IT is broken
Currently health IT is broken. Data is locked into paper records and a multitude of obsolete siloed systems, each with their own proprietary, often idiosyncratic, data formats. Records are fragmented and incomplete leading to inefficient care, poor outcomes and wasted resources.
The NHS consists of islands of excellence within a service that fails to provide continuity of care across increasingly complex pathways.
The vendors that dominate each segment of the IT market deliver obsolete systems, based on designs originating in the last century – before the rise of the internet and the invention of the smartphone.
These vendors form an unresponsive oligopoly in each market segment, relying on system and data lock-in for customer retention rather than quality, service and value. The primary care vendors in particular have attracted the ire of both the current health secretary and his predecesors, but we have the same problem in all market segments.
A massive market failure
There are many innovative developers producing great applications, but they struggle to get a foothold in the market and in the last 25 years none has got to scale (ie. developed beyond a small or medium sized enterprise).
This is evidence of a massive market failure. Innovation never comes from the incumbents – they have too much to lose; only from challenger companies with nothing to lose and everything to gain. If we look at other sectors, the household names that transformed them were unknown 10 let alone 25 years ago. Where are their equivalents in health?
Matt Hancock’s vision looks like a serious attempt to address these issues, but does it go far enough? Will the money follow the rhetoric or continue to be spent on the usual suspects?
If we want to see digital technology enable the sort of transformational change we have seen in other sectors we need to end vendor and data lock-in, put the control of data firmly in the hands of patients and their care provides, and allow both to open it up to innovative applications that can enable better care.
We need to move away from patient records being fragmented and duplicated across multiple incompatible systems. We need to move instead to an approach that provides a single source of truth, where all applications supporting the care of a individual use a single shared authoritative record stored in a repository chosen by the patient.
This approach is an open platform as characterised by the Apperta Foundation in its publication “Defining an Open Platform”. This lays out some core principle designed to ensure an end to vendor and data lock-in. It proposes the open standards that can support a truly vendor neutral open platform, and enable any willing party to build applications and services that will become part of an open platform ecosystem.
The open platform definition calls for the use of four key open standards. Matt Hancock’s vision mentions only two of them – HL7 FHIR and SNOMED-CT. The other two are IHE-XDS and openEHR. IHE-XDS provides a vendor neutral archive to store images, documents and any other unstructured or semi-structured data. openEHR, meanwhile, provides a vendor neutral archive for fine grained structured and coded data.
A variety of vested interests
They work well together and have been proven at scale as the basis of large open platform implementations in Moscow and Slovenia.
I was recently asked: “If open platforms are such a good idea, why have none of the big incumbent vendors done it?” The answer is simple: they don’t want to. Asking the incumbent vendors to open up their data and support vendor neutral architectures is like asking the Christmas turkeys to help make the stuffing – they might help you find the sage but they are going to hide the onions.
So I welcome Matt Hancock’s vision to do something radically different. I welcome the openness of his approach in seeking to iterate and improve. I particularly welcome his desire to use open standards complying with the Cabinet Office’s Open Standards Principles (although we will have to make an exception for SNOMED-CT, which sadly does not comply).
But I can’t keep the old cynic entirely at bay, and I have some advice for the secretary of state. Those advising you either have a vested interest in the outcome (I certainly do) or they don’t know what they are talking about (I might not). Don’t look for independent good quality advice – it doesn’t exist. Look instead for advice from the innovators who are open and honest about their vested interests.
In particular, be wary of the incumbents who will do all they can to ensure their customers remain locked in and will continue to play lip service to ending it. Interoperability and open APIs are not enough.
Ewan Davis is a digital health strategist, chief executive of inidus and a non-executive director at Digital Health