Advisory board debate: getting digital inclusion onto the health and care agenda

The rapid deployment of healthcare technology has been one of the most commented features of the NHS’ response to the coronavirus pandemic. Yet a significant minority of patients cannot benefit from new, digital services; and risk being overlooked in the rush to go ‘digital first’ in a post-Covid reset. So what can be done to get digital inclusion onto the digital health agenda?

As the novel coronavirus arrived in the UK, the health system moved fast to adopt some kinds of healthcare technology. Trusts implemented remote working solutions and virtual clinics, while primary care shifted almost overnight to phone and video consultations. 

As the NHS prepares to ‘reset’ for the winter and another round of reform, most of the focus in the health tech community has been on how it can retain and build on these initiatives. However, a significant minority of patients have not been able to access new, digital services, and there is a danger their needs will be overlooked in the rush to develop ‘digital first’ approaches on the other side of the pandemic.

At its July meeting, Highland Marketing’s advisory board took a look at this issue, with presentations from Anne Cooper, a nurse-leader and technology evangelist, who lives with Type 1 Diabetes, and Roz Davies, the managing director of mHabitat, a co-design digital innovation and inclusion agency hosted by the NHS with a mission to ensure everyone benefits from digitally-enabled health and care.

The tech revolution in diabetes care

Type 1 Diabetes is an auto-immune condition that means the pancreas can produce little or no insulin, the hormone that regulates the storage and use of glucose and fat. This means people living with Type 1 Diabetes – and there are 400,000 of them in the UK – must regularly measure their blood glucose level and take insulin to keep it within a healthy range.

Anne Cooper showed the advisory board some of the technology that she has been given to do this since she was diagnosed with Type 1 in 1979. Back then, testing meant taking a urine sample, mixing it with water, and comparing the results with a colour chart, while her treatment kit included “a syringe, which I had to boil, with re-usable needles, that went blunt, and a bottle of insulin to draw up.”

A big step forward was getting an insulin pump small enough to sit in a bra to deliver short-acting insulin through the skin 24-hours per day. While testing improved with the development of testing strips and then the FreeStyle Libre, a sensor that sits on the arm and measures sugar levels in the fluid under the skin.

“For me, the real difference with the Libre was the data it generated,” Anne told the board. Instead of talking about blood glucose levels – always shown as perfect on older product packaging – “we can talk about ‘time in range’ and that is a massive step forward.”

In fact, Anne has just started using another device, called Bubble, to take readings from the FreeStyle Libre, display them on a smartphone app, and send hypo or hyper alerts. Anne showed the board readings from “a roller-coaster day” in which she had struggled to keep her blood glucose levels within range.

While it had been “a difficult day,” she said it showed how “giving data to patients to manage their condition can be quite significant.” However, “and there is a however,” she acknowledged that it isn’t for everyone. The NHS will fund the FreeStyle Libre, but only if patients meet certain criteria and subject to local discretion. Additions like the Bubble must be paid for.

A significant amount of medical, scientific and mathematical knowledge is needed to use these devices and to interpret their data. And patients have to ‘get’ the point of going to so much expense and effort.

“I am quite patient activated,” Anne argued. “I manage my condition. I have embedded the behaviours required to do that in my life. That makes it more likely that I will adopt this kind of technology. Other people will not be in that position. It is the equivalent of culture in an organisation doing EPR. You cannot just give people technology; they have to be able to use it.”

Digital health exclusion, and the challenge of Covid-19

Roz Davies picked up on these points, noting that surveys suggest that around 11.7 million people, or 22% of the population, lack the five basic digital skills that the government believes are essential for every-day life, while 3.6 million are offline and 1.9 million households lack access to the internet.

Many of the people who lack skills or access are older, poorer, and more likely to be disabled. Roz pointed out that these are the groups who are most likely to have significant health and care needs and to be poorly served by existing hospital and GP services. They are also the groups most likely to have been hit hard by the recent pandemic.

“Before Covid-19, around 14 million people lived in poverty in the UK; 8 million people of working age, 4 million children and 2 million pensioners,” she said. “The impact of Covid is likely to have pushed another 1.1 million people below the poverty line, including 200,000 children.

“We also know that death rates from Covid-19 in the most deprived areas are double those in the least deprived areas – probably because people are working in jobs with more dangerous conditions, living in over-crowded housing, and living with underlying health conditions that make them more vulnerable to the disease.”

Plus, of course, people without digital skills or access will have been unable to shop and see family and friends online, or even access education for their children while schools and colleges have been closed. All of which makes it particularly important to make sure that they are not excluded from the next wave of health and care innovation.

However, this won’t be fast or easy. Roz argued that digital exclusion is a classic “wicked system problem” – it is “complex, messy and hard to solve” because addressing any one element tends to change the nature of the problem by impacting on another.

Roz said research and mHabitat’s work had shown there are three domains to address: life circumstances (income, housing etc), digital issues (access, skills, motivation), and system issues (design, staff capabilities and attitudes).

mHabitat is working on a process that local areas can use to address these domains and make sure that groups and individuals are involved at every stage of process redesign, from defining the problem to developing, testing and rolling out a solution.

mHabitat is working on an ‘inclusive digital transformation’ design process that local health and care systems and others seeking to use digital tools and resources can use to address these domains, and make sure that groups and individuals are involved at every stage of process redesign, from defining the problem to developing, testing and rolling out a solution.

In the meantime, Roz said her top five tips were: “1. Don’t start with the tech, start with the people. 2. Understand that people are not part of the problem, they are part of the solution. 3. Use a co-design approach. 4. Gather allies and share experience with other stakeholders. 5. Understand that this needs genuine leadership and investment of resources.”

Discussion: tackling access

In discussion, members of the advisory board felt that some of Roz’s domains should be easier to tackle than others. Andy Kinnear, a former NHS chief information officer working on digital projects while Covid-19 stops him walking the length of Britain,argued the cost of rolling out internet access and skills training would be “bloody peanuts” in the grand scheme of things.

Cindy Fedell, the executive CIO of West Yorkshire and Harrogate ICS, as well as Bradford Teaching Hospitals and Airedale Hospital NHS trusts,agreed: “When we put in sewers, and running water, and trains, and phones, they became a standard,” she said. “I think we need to get into that utilities mindset for technology.”

Other members pointed out that the Smart Cities initiative is trying to roll-out free, public wi-fi, while the NHS has had its own free wi-fi programme that might be replicated by other organisations, such as housing associations.

Andrena Logue, an independent healthcare technology analyst at Experiential HealthTech, suggested that companies running hardware refreshes could be given tax breaks or other incentives to donate devices to organisations that could make use of them.

Or that the NHS could use its not-insignificant buying power to put technology in the hands of end-users. After all, she pointed out, that rapid roll-out of remote working and virtual consultations in the first phase of the Covid-19 response had been supported by national contracts for Microsoft Teams and Attend Anywhere.

Surely, such deals could be “extended or re-imagined” to support specific cohorts of patients?

James Norman, healthcare CIO, EMEA, at Dell EMC, took another tack, by asking Anne Cooper if local services were looking to fund technology by realising the benefit of patients doing some of the work that professionals do.

Anne said there was a case to be made. “I rarely see my team, I look after myself and send them the data, which should fit with the new world of remote consultation.” But the NHS struggles to make it. “The technology is expensive upfront” and studies are not run over a long enough time frame to establish long-term benefit.

Discussion: a small window of opportunity

Nicola Haywood-Alexander, a certified health CIO, consultant, and co-founder of Tech4CV19, picked up on Anne Cooper’s point that “there is no point just giving people technology, they have to be able to use it” and made the case that some barriers could be overcome if technology was easier to use.

“There is something here about design,” she pointed out. “We have standards in the NHS these days for interoperability, so why don’t we have standards for usability?” Roz Davies said she liked this idea, because it spoke “the language of the system.”

But she said there was still a need to address the other domains; to find ways to activate clinicians, motivate people to manage their health and wellbeing, and “engage locally, because that is where the issues lie.”

Members of the board were keen to find ways of getting digital inclusion onto the agenda of their own organisations. Roz advised them to revisit her five top tips. “This is about influencing the areas that you work in,” she said. “Show leadership, find allies and get it on to the agenda.”

There was also agreement that action is urgent. Andy Kinnear said the social solidarity seen in the early days of the pandemic is giving way to some “incredibly selfish behaviour” as people respond to the English government’s “disorganised” lifting of lockdown by crowding into pubs and beaches.

While advisory board chair Jeremy Nettle agreed there was a danger that as Covid-19 came under control people will forget about those vulnerable groups who have been most impacted. “We might not go straight back to where we were before Covid, but this is the moment to talk about digital inclusion, because otherwise we will lose the moment,” he said.