Beyond data – why community engagement must be central to digital inclusion

As health services become increasingly technology-enabled, leaders across health and social care are grappling with the challenge of ensuring digital inclusion for their communities. Through our Digital ICS support programme, we recently brought system leaders together to share learning on how to navigate the complexities of designing inclusive digital services, and to reflect on the role system leaders play in driving this. The discussion highlighted the importance, and the limits, of data when designing digital services that are truly accessible to all.

One of the most powerful contributions came from Jenny Mason, digital strategy workstream lead at NHS Cheshire and Merseyside Health and Care Partnership. She reminded us that while data is essential, it's not the full story.

During the pandemic, leading digital inclusion at a system level became a focus for Cheshire and Merseyside ICS. In collaboration with system partners, the integrated care system (ICS) developed a digital inclusion heatmap and toolkit to identify areas within the community that might need extra support with digital-only services. It's a resource the ICS is rightfully proud of, and one that's now recognised as best practice in NHS England's Digital Inclusion Framework.

But as Jenny brought to life in her reflections, data is only part of the picture. While the toolkit can help identify where exclusion exists, it doesn't tell us who is affected, or why.

Data is static – people's lives are not

There's an important element to digital inclusion work that is often overlooked – the power of going out into the community. More and more digital leaders are recognising the need to hear first-hand how digital services affect people's lives and how they can be improved or adapted.

Digital exclusion isn't a fixed state. A person's ability to engage with digital services can change. One month someone could have to choose between paying their Wi-Fi bill or buying food, drastically changing their ability to access services, especially those that are online. Jenny reflected that these types of trade-offs, while invisible in most datasets, are common in the communities ICS's serve.

Within this discussion, it is important to remember that 'becoming digital' is not the goal in itself. For some, digital services can offer convenience and control – like ordering a repeat prescription from a smartphone on the bus to work. For others, in-person services can offer connection and routine – a brief chat with a pharmacist or neighbour while picking up medication might be the only social interaction someone has that week. Sometimes the value of these connections outweigh the value of a more efficient digital process that's done in isolation.

System digital leaders who have made the most progress on digital inclusion emphasise the importance of meeting people where they are. This means going into communities, hearing the stories of how people interact with health services, and deepening your understanding of what digital exclusion looks like within your system. Designing services (digital or not) that work for everyone, starts with not assuming what people need or want, but asking, listening and being present. 

So, if everyone's needs and abilities are different, how do we design services that don't exclude?

There's never going to be one right answer, but important elements will include:

• Building trust with communities to strengthen belief that digital services are safe and can help
• Ensuring there are well-designed digital and non-digital options
• Supporting people to use technology in a way that makes sense for them, and
• Capturing regular feedback to inform continuous improvement.

A consistent theme that echoed across the panel was that building trust in digital services is often difficult and doesn't happen overnight. It takes time, visibility and consistent community engagement to build services that are supportive and responsive to the changing needs of staff and communities.

ICS leaders know this is all easier said than done. So start by tackling something small – something that matters to people that your ICS may not be getting right yet.  You'll often find that even seemingly simple problems are knotty and require close partnership working across the system to untangle. As our panel reflected, that kind of dedicated collaboration can be challenging at times, but the value it brings to people and services is well worth it. 

Maintaining momentum on digital inclusion

There's growing excitement about advancements like the NHS App and how it could evolve to support better access for patients and carers. But no matter how advanced our technology becomes, we must not lose sight of the lived experiences behind the data. Health and care services should be designed to reflect people's nuanced and changing needs for accessing care.

Digital inclusion is complex and there's no one-size-fits-all solution. But one thing became clear through our peer learning discussions: meaningful progress starts when we look beyond the data and into the community. And designing digital services from a place of understanding, embedding feedback loops and committing to inclusive design at every step is a great place to start.

The Digital ICS programme is a free support offer designed to support all integrated care board and ICS leaders to better harness digital transformation to enable delivery of system ambitions. The programme is commissioned by NHS England as part of their NHS Digital Academy and delivered by NHS Providers in partnership with NHS Confederation and Public Digital.