Talking Trust

We're doing a lot of working around technology-enabled care at the moment, and this article from the Ada Lovelace Institute particularly resonated with us. Our work always focuses on those of us who are often furthest from being able to access the opportunities of the internet. Sometimes that's because we don't have access to the actual 'stuff' that we need to get online: not all of us have a smartphone, or a laptop, or even the data and connectivity we need to do anything useful, because that stuff is expensive. It changes all the time, is always updating, and the data needed to run it is always increasing. But digital inequality isn't just about the 'stuff': it's also about whether or not we have the skills, confidence and digital understanding to use the digital tools that are there, which might help us in our offline lives too. And what we know, what all the research tells us, is that this kind of digital understanding isn't equally shared: we don't all have the same knowledge, mostly because we haven't had the same opportunities. Some of us have had an easier ride, and so we have the money, the jobs, the safe and supported accommodation as well as the devices, skills, all manners of learning, networks of support and (to put it bluntly) privilege, which allows us to coast through new digital tools, and reap the benefits. We're trying AI at home on our sofa, playing around with it to see how it works, how it might benefit us; we're scrolling on LinkedIn looking for new and better jobs, or joining communities to help us get further, and, and, and...

And we're staying healthier. We're less likely to die.

Sounds dramatic? That digital inequality can impact on our ability to stay alive? I know, right? But here we are. This isn't the stuff of science fiction, but rather it where we are, right now. In the darkest of Covid times, all of our health information and our healthcare was online only. There were no offline solutions then. In the aftermath of lockdowns, we saw an increase in articles like this one in the BMJ, noting that, the wholesale application of technology-enabled healthcare or the 'digital gold rush' offering uniform solutions is built on a foundation of systemic inequality and 'is in danger of dismantling one of the founding principles of the NHS—equal access to the health system for all.'

If we're diagnosed with diabetes, there's an app that can help us manage our blood sugar, our diet, our exercise and create really helpful data to keep us well. If we're diagnosed with a heart condition, there is an app which can monitor our heart for palpitations and murmurs, which can cause strokes and heart attacks, and can connect us immediately to specialists if anything is flagged up as a cause for concern, thus preventing deaths. There is another app for people living with breast cancer, which keeps track of treatment and wellbeing, recording fatigue, appetite, pain and other health facts to spot trends and help improve our care and, ultimately, our outcomes.

These are just a few examples, but the point is the same. The Ada Lovelace Institute words it as: 'The inflexibility of many digital health services (like not seeing a suitable option on an online form or triage service, or not being able to use online platforms due to time, skills or cost constraints) is widening the health gap for some people with complex care needs or who experience poverty.'

In our words: if we don't have the digital access and the digital understanding, we don't have the same access to the same care. We're more likely to die.

So what to do?

Our buddies over Citizens Online recently shared some fascinating work they've been leading on through GP surgeries, exploring the challenges faced by both those of us accessing healthcare and those of us delivering healthcare. In line with our own research, and in line with the Ada Lovelace Institute, what we're all seeing is that people need to be able to trust these new digital systems and tools: even those of us who are pretty digitally savvy are suspicious of new interventions where sometimes issues like privacy and security aren't clear to us. One of the expert researchers in the Ada Lovelace report notes 'a lot of people don’t trust it. And they wouldn’t know how to navigate – they say it’s too hard to navigate. People just don’t trust digital. A lot of people don’t have computers, and a lot of people don’t know how to use it.'

So for those of us with lower levels of digital privilege, we really, really need some help here.

At Citizens Online, what the team found was that health professionals who are able to make the space to support people at the point of 'prescription' with digital technology can make a real difference, offering trusted, trustworthy, deeply informed and safe spaces for the exploration of patient concerns. They can inspire confidence in using the new tools, showing how it might benefit us. This picture is also reflected in third sector organisations, where trusted people, trained in holistic care and trauma-informed practice can make an unbelievable difference to digital confidence (Over at Simon Community Scotland , 100% of folk accessing digital champion support said the trusted person made a huge difference to their confidence). The relational approach is a game-changer. But it's slow.

And those of us working in these health specific spaces are time-pressed, over-stretched and also often completely unfamiliar ourselves with this landscape which crosses from health into something new...an unfamiliar terrain... a kind of community-learning-health hybrid? No wonder that in these roles, we're seeking an 'expert' to refer out to. Can the libraries take these patients, maybe? They know about learning, don't they? Perhaps it could be a third-sector organisation? They have time, don't they?

But yet, what we keep hearing, is that the very best person to explain a new app to help manage a heart condition, to help us trust the system, is the cardiologist. Or the Heart Nurse. They know best, and we trust them, deeply. We literally trust them with out lives.

Support at this point in our journey as patients has the power to change everything, and enable us to actually use these things that could save our lives. This in turn would give the cardiologist, the heart nurse more time further down the line, to do other stuff that we can't do for ourselves.

Explaining trust in digital tools could be tricky though. How do we answer people's questions if digital inclusion isn't our day job? How do we explore the ethics a wee bit, without it swamping us? What are the questions that folk will ask? Where are the answers?

The questions might look a wee bit like this:

We need people creating digital tools and services to help us here, to make sure the answers to the questions are clear. And then, as people with empathy, listening skills, and a commitment to helping folk, we can 'translate' the answers to our own context, and make them meaningful to those we walk alongside.

Our team member, Dave Donnelly created the wee video below, using NHS Inform as an example, exploring how we can talk about trust, how we can explain and talk about the issues that matter most to us, that might negatively impact on whether or not we use an app. These conversations are so vital, and if we are working in these spaces, providing care to people, we need to make the necessary space to have them.

It could save a life.

#TEC #TechnologyEnabledHealthcare #DigitalInequality #DigitalInclusion #DigitalExclusion