Patients must be the architects of digital health
In the age of austerity you can pretty much boil healthcare policy down to the maxim ‘doing more with less’.
‘Less’ has been amply represented in the last few years by public sector pay freezes and back-office administrative cuts - the bulk of the £5.8 billion savings in the ‘Nicholson challenge’ to date. And the first analysis from the National Audit Office thankfully showed no immediate impact on top level quality indicators.
More recently digital health seems to be offering policy-makers a bite at the ‘more’ agenda. Out of the belt-tightening gloom of savings appears the luminous promise of electronic progress. The world is ablaze with paperless NHSes, ‘app-libraries’ and, yes, digital health conferences. Whether we’re about to witness a digitally driven get-out-of-jail-free card for healthcare, we can only find out over the next few years.
But as the relationship between digital and health blossoms this spring we should look beyond the usual health institutions in the way we design our future. If all we are aiming at is ‘digitizing’ the existing healthcare processes we’ll miss the biggest trick of them all; the revolution that has already started: a tidal wave of patients already managing health online off their own backs. The largest NHS trusts attend roughly a million of ‘contacts’ (visits, appointments, telephone calls) over the course of a year.
At HealthUnlocked, the UK’s biggest social network for health, we service over a million patient visits a month, from rheumatoid arthritis to running communities. Members are coming to learn and share information for an average of 35 minutes a visit. A good proportion are coming daily. Almost 100% are positive about the impact it has had on their health, with a quarter of them declaring it to be ‘life-changing’. And the more serious the health condition, the more impact it has.*
The roll-out of electronic patient records, blue button download, interoperability, data privacy, friends and family test will (hopefully) change the lives of patients for the better when they access services. But on average a patient with a chronic condition such as diabetes spends 8,757 hours a year managing their condition on their own and just three hours in the hands of a healthcare professional. Digital health designed around the 99.9% of our year that we spend outside the four walls of the NHS is fundamental.
As ambitious as the emerging governmental blueprint for our future digital may be you could also argue it would benefit from the more sticky fingerprints of real people - patients - all over it. At HealthUnlocked we’ve learnt to listen to our users. We’ve moved from a top-down design process to one that is shaped by the many millions of patient footprints across the platform. What we design is no longer something we feel in our guts or predict - we know from our users’ behaviour. And consequently not a single line of our software code is the same as it was two years ago.
Patients have engineered these changes, from the way they talk about, learn, manage, connect with each other and relate to the 240 health organizations that host our communities. The development of HealthWatch and Patient Participation Groups adopts a similar approach to the evolution of healthcare services in the physical world. Digital health needs to follow that lead 10 times more strongly - because so much of it revolves around individuals, their personal information and how they share it. Are patients in the driving seat of the design of Caldicott2? And if so is it a representative cross-section of patients (those with a rare condtion requiring tertiary care and many different locations of treatment may have a completely different view on data portability and protection to those who just see their GP a couple of times a year?)
As with other industries based around communication (think print, music, film etc), in which the institutional direction of travel has tended to misjudge the desires of a digitally democratized population, it’s worth tuning into people, their behaviour and what they actually want. The opportunity to listen - through social media - exists as never before. And any health organization in the UK can set up a channel in HealthUnlocked and start doing so today.
*Survey of 786 patients in HealthUnlocked November 2012
Matt Jameson Evans is Co-Founder and Chief Medical Officer of Health Unlocked.
The views and opinions expressed in this article are those of the author(s) and do not necessarily reflect the official policy or position of The Information Daily, its parent company or any associated businesses.
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