“Apply the following test. Recall the face of the poorest and the weakest, the most digitally-disengaged patient whom you may have seen, and ask yourself if the step you contemplate is going to be of any use to them? Will they gain anything by it? Will it restore them to a control over their own life and destiny? Will they have the information to make an informed decision?
– with apologies to Gandhi and Martha Lane-Fox
Any strategy for a Digital NHS must account for the furthest first. And, while addressing their needs, must also recognise the circumstances and humanity of all those whom the data is about, via user research. Wanting to help people is not the same as actually helping them – as previous recent NHS strategies have demonstrated.
An effective strategy must be short enough that people can both remember what it is, and hold it in their mind while thinking about the challenge in front of them. A 200-page PDF is not only indigestible, it is undeliverable; our attempt above is at a strategy people could remember.
What follows are guidelines on how not to misapply it.
Strategy
The handling of medical records must be underpinned by accountability – whether “handling” means digital services used by clinicians, by patients, or for secondary uses. If built on a basis of pervasive transparency on all data flows, flawed decisions can be identified and corrected, and progress made within an environment characterised by evidence rather than promises.
Some strands of the Five Year Forward View are mired in secrecy and political choices, which – while any one decision may work out well (or otherwise) for patients – is an unsustainable basis for long-term effective and efficient delivery of public health and care services at nation-scale.
High quality digital services are built with humility, by learning from the real world, with meaningful involvement in the process by patients and clinicians – and others who also contribute, e.g. researchers, administrators, and commercial providers.
There may well be an extremely narrow case for sharing a patient’s entire clinical treatment history with the NHS.UK website backend in order to personalise the front page of that website on an initial visit, but the harm of doing so without fully-informed choice and consent is far greater than the harm of not having that feature at all. And with every such decision arises the opportunity cost of those things (whether treatment or prevention) that will not subsequently be possible, due to the impact of such flawed priorities, and/or patient fears.
Only the NHS
Only the NHS connects people through their lives from cradle to grave – and can therefore tell people how they contributed to research, even long after the event.
Unlike, for example, shonky ‘public-private’ initiatives, hiding behind the NHS ‘brand name’, set up to profit from a ‘Bonfire of the Faxes’, the NHS proper doesn’t bodge it and scarper, leaving others to clean up its messes. It is the NHS that cleans up the messes created by others; thousands upon thousands of true public servants caring for people under their shared and lived understanding of the Hippocratic Oath: Do No Harm.
In the digital world, there is a Talisman that can direct every significant choice. It will not stop post-rationalisation or self-justification of pre-conceived ideas – that outcome is outwith any strategy, lying as it does in the hearts and minds of the strategists themselves. But if the Talisman helps, and is respected and used as a touchstone across the entire system, then it should stop incorrect ideas before they can go wrong at scale, and also encourage good work to flourish.
For if nothing else, this must be a fundamental goal of any (digital) strategy: to support and encourage positive innovation in care and prevention, while not killing people through ignorance, oversight or ideology.