Digital Exclusion: How do we tackle it? — Our NHS roundtable with Digital Health Magazine

Conversations around digital exclusion in healthcare have tended to focus on lower income communities and groups facing societal discrimination. And there are good reasons for this.

Emily Burch, Associate Director of Physical Health at Barnet, Enfield and Haringey Mental Health NHS Trust, stated it was important that “we look at cohorts of patients and groups because I think we sometimes end up excluding (them). There is a whole host of patients within our prison systems that automatically have no access to digital applications and mobile phones…and a whole (group) of people we don’t necessarily think about with learning disabilities.”

While other panellists accepted the need to focus on cohorts to an extent, some argued that the problem is more nuanced.

Clare Green, Transformation Director, pointed out that it isn’t solely a question of thinking about certain demographics or social groups. “When we think about inclusion,” she argued, “I think we need to look at the population as a whole — and with that, generate a set of personas (for analysis). Within those personas, we need to think about what the different needs are. Some people need help to navigate the healthcare system, while for others the challenge is around cognition. For some, it’s about access…to devices.”

Sarah Bradburn, Chief Nursing Informatics Officer, University Hospital Southampton NHS Foundation Trust, pointed out that a lack of digital engagement isn’t necessarily down to a patient’s level of literacy. It’s about considering “the different cycles and people's disease journey or their long-term condition management. They might be digitally literate, but they might not have the resilience, the resource, or the capacity to want to deal with (technology).”

And there are even greater complexities at play. Louise Cave, Advanced Clinical Practitioner, The Christie NHS Foundation Trust, highlighted that some people are “digitally excluded by choice.”

“There are those who’ve got mistrust in the system and do not want to be digital. We haven’t really started to even begin to tackle (that question),” she remarked. And this doesn’t just apply to the patients. As Pamela Fearns, Lead Digital Nurse Implementer, The Christie NHS Foundation Trust, commented, “I have come across clinicians who don’t want to go with the digital solution and who actually described themselves as being ‘militant’, and managed to get other people on board with them. So you end up with a whole team that’s against the idea of moving to a digital platform.”

Clearly, identifying the digitally excluded isn’t straightforward. It requires a focus not just on disadvantaged groups, but a consideration of different patient and staff needs, as well as attitudes towards sharing data.

Another major theme of the discussion was the need for collaboration between different organisations involved in healthcare.

Simon Noel, Chief Nurse Informatics Officer at Oxford University Hospitals NHS Foundation Trust, pointed out that “the methodology (of delivering digital care) isn’t uniform across the NHS” and that there “needs to be a drive to align things to make sure things are better for patients and to cover gaps when patients can’t be engaged in a particular way.”

The point was echoed by Chris Walkling, Senior Digital Programme Manager, Oxford Health NHS Foundation Trust, who talked about how the disjointed nature of healthcare is creating a fragmented patient journey.

“What you’re saying about our internal systems and the way people actually want to engage (is absolutely right),” Simon Noel agreed. “They’re not interested whether they’re coming to Oxford health or their community services or mental health support – they just want (to be attended to). They don’t understand the definition or the boundaries and neither should they need to.”

At this point I asked whether panellists thought that new Integrated Care Systems, which came into force as legal entities in July 2022, would lead to greater collaboration and alignment. While panellists were fairly optimistic, they emphasised some structural issues would probably remain.

Chris Walkling commented on some difficulties involved in deciding areas of responsibility with so many stakeholders and why he thinks a “place-based approach” would be most effective to tackling digital exclusion.

“In Oxfordshire, the county council is our key partner – but they don’t really work together with (the neighbouring councils)”, he explained. “So, if we’re actually going to do some meaningful work, (there’s a risk) of it becoming a bit overwhelming at the ICS level. For me, a kind of place-based approach (would be effective).”

Louise Cave expressed a hope that the new structure would “reduce red tape” and stop the NHS passing responsibility on to social care. Similarly, Emily Burch stated she was optimistic that “ICS will give us a more powerful voice (and) make sure we’re having these conversations as we’re engaging in solutions,” a point that was supported by Pamela Fearns.

The conversation then moved on to some complexities involved in rolling out digital technology. Chris Walkling discussed challenges involved in delivering inclusive solutions for those with mental health conditions.

He posed the question: “Is it just a free for all — so we give you a device, put a SIM card in it, and you can access wherever you want? Well, that becomes quite problematic because, hypothetically, we're working with someone with a gambling addiction, and we've just enabled them to gamble online. I know there's a counterargument, which is that they can walk down the road and go into a betting shop, but, even so, should we say that we’re going to stop people from accessing certain websites which are harmful? There’s a point at which that becomes paternalistic.”

As well as the risk of paternalism, Simon Noel pointed out that certain technological solutions, such as virtual wards — which should theoretically boost accessibility - actually rely on a level of digital maturity among patients.

“In a lot of circumstances, we’ll ask the patient to go online and submit their own results (to be eligible). So, you’ve already got a level of digital engagement there,” potentially shutting out some people at the beginning of the process.

Emily Burch talked about the Covid-19 vaccine rollout and how her team had reached people with learning disabilities. She explained how her team was “able to look at the information that came through from primary care and figure out who could manage an online service and who was best going to get their information from the internet and from those sources, but also (people) who perhaps didn't engage very well. We would then have specialists contacting those individuals (who were less engaged) to ensure they knew about services being offered.”

However, she emphasised that this was still “challenging” and “probably requires a lot of improvement” if they were to do it again due to the lack of high-quality data.

Culture is important, too. Mike Culshaw, Chief Technology Officer, Pennine Care NHS Foundation Trust, highlighted the need for a “fail-fast” culture when it comes to implementing digital solutions. “We need to empower people to be able to fail fast. We've got to do that or else we're never going to change anything.”