Health matters

UKHealthCamp logo

Today, me and a few other co-conspirators announced UKHealthCamp – an ‘unconference’ for everyone interested in digital, design, data and technology for health and care.

I want to explain why we think this is important, and why it’s time the NHS entered the Internet age.

(But first – please do sign up and give it a mention on Twitter.)

Government is (relatively) boring

Three weeks ago I left the Government Digital Service after 18 (great) months. I’ve joined the Department of Health, and this week we’re starting work on NHS.UK Alpha. Exciting stuff – more on that later.

I loved my time at GDS. It isn’t perfect, but (the soon to be dearly departed) Mike Bracken managed to pull off nothing short of a magic trick: to bring government into the Internet age. Of the web, not on the web. The shift was from e-government – digitised versions of paper forms and portals tacked on to massive IT systems – to designing public services to be digital first.

Mike ushered into government for the first time some of the best and the brightest designers, coders and researchers. Government got access to world class digital talent; they got to work on Serious Stuff for the Good of the Nation instead of working for Old Street startups printing photos on marshmallows. Win-win. Thanks Mike.

But try as I might, I struggled to get excited by new ways to make it easier to pay taxes or apply for a driving license. That’s not to say that these things aren’t important (they are) or interesting design / technology challenges (they are).

The reason I wasn’t enthused was because I had daily access to something even more important and interesting: the NHS.

At GDS I was the only person focused on health and the NHS. I saw opportunities to makes things better for users that were not just of a magnitude larger than within central government, but of an altogether different category. In health, you’re not just saving people from a crappy user experience, you’re saving lives.

So it seems odd, then, that the digital ‘revolution’ that swept through government following Martha Lane-Fox’s 2010 report didn’t seem to make much impact in health.

Particularly odd, given the priority that government and society places on the NHS. With a £22bn funding gap and a growing, older and sicker population there is no greater challenge facing this country.

So where is the NHS digital revolution?

Why oh why oh why…

That’s not to say there’s not some great examples of digital done right in the NHS.

If you’ve not tried to register as a blood donor online, do it now. It is a service designed really well by NHS Blood and Transplant. HSCIC just delivered a replacement for the NHS Spine using Riak with help from SMEs, building in house capability and moving away from an expensive proprietary system. NHS Hack Day has built into a real community of geeks and clinicians focused on fixing the NHS. medConfidential is a loud and effective voice for data privacy. SH:24 has shown the value of an agile, design-led approach. And there’s many, many more.

SH:24 test kit

Nor is it to say that there isn’t ambition: the numerous strategies, frameworks and roadmaps published by the NHS leadership over the past few years paint a vivid picture of the technology-enabled future of the NHS: real-time interoperable patient records, mobile apps and advances in genomics and medtech.

So why is the NHS still so far behind when it comes to putting decent services online?

Why do I have to call up first thing in the morning to get a GP appointment, rather than book online? Why are we still filling in paper forms to register with a GP? Why do I have to understand the myriad organisations and rules of the NHS to interact with it?

As one recent DH/NHS strategy put it:

“The consumer experience of care services remains much as it was before the mobile phone and the internet became commonplace.”.

And why is it that:

“the arrival of the digital age has often been experienced not as a force for good but rather as an intrusive additional burden in an already pressured existence”

… for doctors and nurses?

I was reminded of this yesterday when I tried – unsuccessfully – to help a GP (a family friend) do her first electronic outpatient referral. She showed me the two A4 pieces of paper full of handwritten passwords for the catalogue of IT systems she had to use. GPs at her practice have to arrive early – it takes at least 15 minutes to login to their computers in the morning. I fear that is both relatively common and actually not that bad compared to others.

In central government, the talk is of ‘technology at least as good as people have at home‘. In the NHS this is nothing short of a pipedream – paper is still the technology of choice for large parts of the health service. At least GPs have got IT systems, however clunky.

So…

  • Where is the co-ordinated plan to lure the army of data scientists and digital specialists into the NHS to put them to work on its biggest problems? I’ve got no doubt there is a huge appetite out there – but where do they go? Do we have the right kind of environment for them to flourish?
  • Where are the civic tech voices painting a vision for a digital NHS? Where is the mySociety of health?
  • What is the equivalent vision of ‘government-as-a-platform’ for health, social care and local government?
  • Where are the technology reformers talking about how we could get better for less, harness cloud technology and stop bad IT to unlock much needed savings?
  • Why is digital still seen as the inferior and superficial sibling of IT in health, focused on publishing rather than at the heart of service transformation?
  • Who is thinking about how digital and blockchain technologies could help to resolve trust and consent for patient records?
  • Where is the community of digital types in the NHS building momentum for service design and digital transformation? (That’s where I hope UKHealthCamp can play a small part.)

Why does health lag behind?

So what is the answer to these questions?

The major digital problem facing the NHS today is different from that faced by central government in 2010. In government, many services were already online – the big transaction houses HMRC, DWP and DVLA especially had been plugging away for years – but digital take-up was too often low because services were hard to access and difficult to use.

In the NHS, the main problem is that most services simply don’t exist online.

Some interactions with health and care professionals will probably never be suited to the web. But so much of the booking, form filling and phone calls could be better served for many by well designed digital services. So much failure demand could be avoided if we got it right first time – understanding a user’s needs, giving them the right information and sending them to the right places.

All this would free up time on the front line to dedicate to care, and to help those who can’t or won’t use online services. But still, too often these digital services simply don’t exist.

There’s probably a few reasons for this. These are the ones I’ve heard.

1. Health is different (read: the lessons from central government don’t apply here).

Yes of course its different, but its not that different!

Services need to be safe and clinically effective. The needs of clinicians need to be understood. We need to take assisted digital and digital inclusion seriously – the NHS is a universal service.

This is all true, but services still need to be designed to meet user needs. Agile is still a good way to deliver useful software. Procurement and security still need fixing. The web is still the medium.

There’s nothing to be gained from a health sector that builds a ghetto for itself shielded away from the advantages of digital organisations – the ability to develop, iterate and test a product with a small multi-disciplined team in a matter of days.

2. The NHS is large, diverse and complex.

Bloody massive, actually. And it’s not just the NHS either – social care, local government and the third sector are taking more and more of the strain. The pendulum swings between national control and local autonomy. Incentives and controls don’t always produce the right outcomes.

From Insight Public Affairs

Some of these issues will persist. Change is hard (remember – it’s not complicated, just hard). You cannot click your fingers and expect a whole sector to change. And the problems the NHS is trying to tackle at the moment are legion – digital can seem low down on the priority list.

But perhaps a different, digital approach would help. One that starts with user needs and tries to make things better, service-by-service.

Combine that with a platform mindset where some problems can be solved once based on open standards for the whole sector without everything being wholly local or wholly national.

3. The legacy of the failed National Programme for IT has held back progress in digital/technology.

Yes, it has. It became a poster child for massive government IT failures. It soaked up huge amounts of cash and squandered much remaining goodwill towards anything that smells like an NHS technology project.

My reckon, though, is that the main impact of NPfIT was to freeze the NHS at a certain point in time in computing terms.

The design of NHS technology has not fundamentally changed since the National Programme for IT. The major components it delivered – local hospital systems, N3, Spine, Choose and Book, NHSMail – are still in place, largely unchanged.

Yet NPfIT was designed in a different era. On the web, but not of the web. Yes, a previous generation of web technologies were used, but the fat client-server model dominated. The focus was (and still is) on moving existing processes and paper onto computerised systems. And the whole thing sits on N3 – a private Internet for the NHS.

If NPfIT brought the NHS kicking and screaming into the 1990s (albeit a decade or so late), then the next challenge is to bring it into the 2000s. To give people access to decent services on the web. To fix the basics. Then we can start to play around the exciting world of wearables and blockchains. For now I’d just like to book an appointment.

#WeAreNotWaiting

There aren’t any shortcuts to all this. We have lots of learn from the decades of change and technology in the NHS. Transformation is a hard slog.

But there’s some cause for optimism.

First, read this:

“if we truly want to change from a bureaucratic to a patient-centric system, the NHS needs a profound transformation in its culture. ‘Patient-centric’ is horrible phrase. How about ‘more human’ – the title of Steve Hilton’s recent book? Because the truth is that decades of building processes around system targets and system objectives, often with the best of intentions, has demoralised staff and patients and dehumanised what should be some of the most human organisations we have.”

Sounds good, right?

Well, that’s from a speech last month from Jeremy Hunt. While other parts of the speech weren’t universally welcomed, it is great to hear a cabinet minister talking about designing services around humans. Not just policy – this is about service design and delivery.

But while a strong mandate from the centre is crucial, things are happening already. They are happening despite of, rather than because of, any central support.

#WeAreNotWaiting is movement of people with diabetes who are hacking their medical devices to improve their health and the health of others.

“Hashtag #WeAreNotWaiting is the rally cry of folks in the diabetes community who are taking matters into their own hands; they’re developing platforms and apps and cloud-based solutions, and reverse-engineering existing products when needed in order to help people with diabetes better utilize devices and health data for improved outcomes”

It is in the spirit of #WeAreNotWaiting that we’ve started UKHealthCamp.

We think it is time to stop waiting for the NHS to enter the Internet age, and start making it a reality.

We don’t have all the answers. Come join us!

#UKHealthCamp

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