I suppose it was a bit ambitious but deciding to celebrate the 30th anniversary of the world wide web by signing up to the NHS App seemed a good idea. Thirty minutes of my life later and, after three attempts to get whatever intelligence was at the other end to match my passport photo with the verification video I was asked to record, I gave up. I don’t know what was wrong – that technology always seems to work OK at Heathrow. I needn’t have been surprised. Readers will note a recurring theme in my blogs is that things are rarely straightforward and any suggestion that there are simple solutions is, at best misguided, at worst, a deceit. I do actually think the NHS App is a promising concept. But if my experience is anything to go by, there is some ironing out to do if it really is going to capture the hearts and minds of the healthcare seeking public.
Perhaps I use the word “capture” carelessly. But then much of the discussion in the press around the web’s 30th anniversary, has centred on control. In recent years, Sir Tim Berners-Lee has marked each anniversary with an open letter. Whilst maintaining his optimism, Berners-Lee has pointed out the challenges now faced. In 2014 he advocated an online Magna Carta calling for a digital Bill of Rights for each country supported by governments, public institutions and corporations.
By 2017, Berners-Lee’s outlook was starting to be tested -“I’m still an optimist, but an optimist standing at the top of the hill with a nasty storm blowing in my face, hanging on to the fence” he said in an interview at the time. The storm was (and is) the spread of misinformation and propaganda and the way the advertising systems of the large digital platforms are designed to capture people’s attention. Continuing revelations about the antics of Russian agents, Cambridge Analytica, Facebook et al expose a world of micro manipulation through AI and algorithms. ISPs deny net neutrality (a fundamental of the free internet) by blocking competing services and products.
Come 2019 and Berners-Lee’s 30th anniversary letter. He writes “The web has become a public square, a library, a doctor’s office, a shop, a school, a design studio, an office, a cinema, a bank, and so much more. Of course, with every new feature, every new website, the divide between those who are online and those who are not increases, making it all the more imperative to make the web available for everyone.”
In addition to the danger of deliberate, malicious intent, he highlights the perverse incentives like ad-based revenue models that reward clickbait and the “viral spread of misinformation” and the platforms that despite original intentions, foster and let fester outrage, polarisation and reduce the possibility of any genuine discourse.
In tackling this “(y)ou can’t just blame one government, one social network or the human spirit. Simplistic narratives risk exhausting our energy as we chase the symptoms of these problems instead of focusing on their root causes. To get this right, we will need to come together as a global web community”. Hence the Web Foundation’s current attempt to bring together agreement for a Contract for the Web – more than a list of quick fixes but something that shifts our understanding of our relationship with our online community.
So, what has this got to do with health? Clearly health is not immune to some of the problems. Recently Simon Stevens has spoken out about messages spread on social media encouraging vaccination denial as being “fake news” and just a few days ago we had the crass tale of a man in California being told he was going to die by a doctor on a video-link robot.
And where does this thinking leave the UK health environment as it moves to introduce the NHS App, move outpatients appointments into the virtual realm and replace some GP appointments with a friendly algorithm? Surely these are all safeguarded from the threats that Sir Tim has raised?
Maybe – though Berners-Lee reminds us that citizens must always keep vigilance and keep governments and corporations accountable for the commitments they make. But it could also be that by viewing each technological intervention separately as “solutions” to specific problems, we once again miss some of the complexity, the interconnectedness and the nuance of our relationship with it all. It’s not just these applications of course – we are also talking of a digital world of big data and analytics, robotics, monitoring, AI and remote control of patient care. To what extent do these still sit at odds with our current paradigm of what health is, what it means to us and those we care for, and what care should be?
We are going through a time when the paradigm is shifting but it is a mistake to think that new paradigms can be imposed. The complex interactions of our beliefs, values, behaviours and processes behave like a system with many players. Component parts of systems adjust within their own time scales within a period of some lasting upheaval before a steady-state (if ever) is reached. In this dynamic situation power changes. On the one hand, the app user has the power in their palm; on the other hand the power lies with the custodians of data and the way it is manipulated and used. As Primary Care Networks develop bigger data approaches and more sophisticated predictions in an attempt to target interventions; as genetic information adds to the picture tailoring the care, not all of us, whatever the promised advantages, will necessarily take kindly to some geek, human or otherwise, calling the shots.
At the heart of Berners-Lees concerns is the belief in the web as a universal asset for all. He raises concerns for those who miss out. So much of health care is about helping people to engage. Despites the essence of its links the internet can also be a hugely isolating influence as we feverishly exercise our thumbs and fixate on a five-inch screen. Isolation is associated with poorer outcomes. In a world where some will leap aboard, others, for whatever reason will lag behind or even opt out
And, of course, there will always be those who have to make several attempts to get the AI to match their passport photo with their video meme.