The clinical data collected by hospitals in England is almost completely useless. So says Tim Kelsey, the recently appointed National Director for Patients and Information. It’s so bad, he believes, that National Clinical Directors charged with commissioning services simply cannot do their job because there is no useful data to base their work on.He should know. Tim was the co-founder of Dr Foster Intelligence, a company that pioneered the publication of healthcare activity data in England*. Tim was speaking at the Cambridge Health Network (CHN), an invite-only forum for leading players in health in the UK, and it was apparently the first time he was sharing his vision with a wider audience.
His vision is to have patients at the heart of the system, and for the system to be underpinned by two values – transparency and participation. Most observers of health care will know that this vision and the underlying values are hardly new, but Tim believes that the time is right to bring them together and create a consumer-led NHS.
It’s tempting to say that technology that has made the time right, with parallels repeatedly being drawn with banking – we are now doing more of it online, whether at our desks or on the move. But, reassuringly, Tim clearly sees technology only as an enabler rather than the end itself – something the English NHS learnt the hard way through its ill-fated National Programme for IT that has created a grave yard of IT systems, most of which are devoid of real use-cases to justify their existence.
It’s not, then, technology per se that has made the time right but the fact that the technology is useful. Technology is also increasingly safe, which is why we trust it more and more with our financial affairs. Useful, safe technology is now widely (if not evenly) distributed across the populous in the form of increasingly affordable computers, tablets and phones. I recently learnt that while the English NHS spent about £10bn on its IT grave yard, consumers spent about £75bn on mobile technology ultimately creating a distribution channel for health-related products and services (apologies, I don’t have a reference for this but my source was reliable). It is this useful, safe, consumer-led network that Tim wants to harness.
To do this he aims to democratise access to health related data**. In this democracy, rather than have 100 big IT companies devising solutions he wants to have 100,000organisations, small, large, for-profit, charity, whatever; and he wants to find ways to stimulate this level of varied participation.
He’s hoping to emulate the Code for Health initiative in the US in which fellowships are awarded to developers and bioinformaticists seeking a career in health. He also wants to train NHS staff in coding – he says it takes about three days to understand the basics – so they can start solving their daily problems. He believes that many people will do this as a hobby rather than fishing or doing yoga. Looking at the recent NHS Hack Day he might be right.
None of this, however, addresses the contention that I started with – that the clinical data being collected is almost completely useless. Tim wasn’t as crystal on this as I would have liked but he did describe the need to have “decent” data and the need to pass laws that give NHS England the right to demand that data being collected is deposited somewhere central for the aforementioned organisations to access and innovate with. My fears would have been allayed had he mentioned, at least in passing, an initiative to improve data definitions, something that I believe to be crucial (and as I mentioned recent in a recent post, the FDA is also worried about this).
CHN’s audience seemed somewhat impressed but I always love to (over?) interpret the questions from the floor. Twice Tim was asked how he would assure the quality of what’s created by the army of 100,000 organisations, the questioners seemingly unwilling or insufficiently experienced to know that the app economy is intrinsically and ruthlessly focussed on usefulness and value (very easy to do when an app costs 69p or less). One questioner even asked whether there would be a new NHS portal to link to, seemingly misunderstanding that in a democratised system information sources are networked and interoperating, not centralised. Such questions seem representative of the current culture of the English NHS in which 80% of primary care practices apparently have the ability to provide digital services (such as online booking and repeat prescriptions) and yet only a handful do.
Tim started the evening citing a few inspirational things that have led him to this moment. One was a comment by George Soros, the open society advocate, who recently said that our social institutions are imperfect and ought to hold themselves open to the idea of improvement. I could not agree with this more. I wish Tim the best of luck in making this a reality.
Competing interests: Although I don’t have a personal relationship with Tim, my recent meetings with him have been congenial perhaps because we share ideologies and, to some extent, a social network.
* Rather disappointingly, the National Commissioning Board’s website describes Dr Foster as a company that publishes patient “outcomes” but this cannot be true seeing as no such data is being collected. The website should forgo marketing the Board members and focus on accuracy and transparency, I feel. Leaders must do as they say.
** I can already hear the same old voices raising exaggerated concerns about confidentiality so let’s just work on the assumption that he’ll do it in a way that is aligned with patient confidentiality.
This post was first published on my original blog, Optimising Clinical Knowledge, and co-posted on BMJ Blogs.