Moving from exclusion to inclusion in digital health and care

Digital technologies can change how care is delivered, making health and care services more accessible, flexible, person centred, and a better experience for patients and staff while also improving efficiency. However, there is no guarantee of these positive effects until digitally enabled services are inclusive and meet the expectations of staff and the public.

Digital exclusion in health and care often overlaps with other forms of social exclusion and disadvantage. It isn’t simple or static, there are nuances and multiple dependencies that change depending on personal or clinical circumstances. In this long read we explore what digital exclusion is, who is commonly assumed to be excluded, and what can be done to mitigate digital exclusion. We highlight the learning from a series of workshops we ran with health and care service providers about how they have successfully tried and tested new approaches to increase digital inclusion. As part of this project we also spoke to people who use health and care services about the challenges they can face in accessing care. In order to hear their voices clearly we have included these experiences in a separate piece of work.

What is digital exclusion in health and care?

Digital exclusion refers to the lack of access, skills and capabilities needed to engage with devices or digital services that help people participate in society. In health care, additional factors that are not relevant to other online interactions can contribute to digital exclusion, for example, privacy may be required for online health services. Digital exclusion can be a barrier when digital tools are the preferred or only way of accessing public services. As more services are delivered online through websites, apps, email and SMS, and online becomes the preferred means of contact, digitally excluded people are in danger of being left behind. Digital inclusion is the approach for overcoming exclusion by addressing the barriers to opportunity, access, knowledge and skills for using technology.

There are commonly held assumptions about who is and isn’t able to use and benefit from digitally enabled health and care services. Groups commonly considered digitally excluded or who experience poorer care through lack of digital services include older people, people with disabilities, ethnic minorities, people who are homeless, sex workers, people from Gypsy, Roma and Traveller communities, people living in rural areas, people from low socio-economic background and those with low digital or literacy skills. Understanding who is excluded is complex and nuanced, which means exclusion can’t be assumed from demographic groups alone. Digital exclusion and its inverse, digital inclusion, are both dynamic and evolving. There are many reasons for this, including, but not limited to, changing technologies, changes in individual’s capabilities and changing public expectations. It is essential that digital services are designed and developed with this constant state of change in mind. In reality, it is possible for anyone to be digitally excluded at some point as their health or personal circumstances change.

What can be done to improve digital inclusion?

Why improve digital inclusion?

Improving digital inclusion means that everyone is equally able to engage with all public services, including health and care services. Well-designed and inclusive digitally enabled services lead to improvements in convenience for staff and users, communication between staff and users, health outcomes, quality and experience of care. If services are not well designed or people are excluded, they are left feeling frustrated, angry and powerless to have the care they seek, as evidenced by the experiences of people we spoke to.

If policy and funding prioritise digital-first services without addressing the barriers to digital inclusion, it’s highly likely to result in increasing inequalities by excluding people who are unable to benefit from digital services. This is because they will have reduced access to digital health services, resources and information and there may be no alternative routes. Digitally enabled services and physical services need to be able to work interchangeably to provide the same quality of care, experience and outcomes.

Our research

In line with the complexities of digital exclusion, there is no silver bullet to reducing digital exclusion in health and care. Those designing services need to recognise the diversity of people’s digital capabilities and access and adjust services accordingly. As part of The King’s Fund’s work to understand and help leaders develop digitally inclusive health and care services, we spoke to service providers about the approaches they are taking to improve digital inclusion. Below, we outline some of the key learning from successful approaches.

These approaches are taken from two workshops we ran with people from health, social care, local authorities, and voluntary, community and social enterprise (VCSE) organisations, and are also informed by our conversations with members of the public.

What we heard from workshop participants can be broadly grouped under the following three headings:

• fixing the fundamentals

• structuring services around people’s needs and preferences

• improving the quality and consistency of services.

Fixing the fundamentals

In England 27 per cent (14 million) people have the lowest digital capability. This means they don’t have regular access to a device or the skills and confidence to turn on a device, use an app, log in and/or enter information on a digital device by themselves. Furthermore, about 30 per cent of people who are offline (ie, no online access or use) find the NHS to be one of the most difficult organisations to interact with. This matches what we heard from the people we spoke with. People told us time and again that access to devices and the associated costs were limiting factors for accessing services digitally alongside familiarity and confidence.

We heard how organisations are tackling these fundamental barriers through a combination of donating devices, providing data, and creating community assets to help build confidence and skills.

Providing devices

There are different approaches to making devices available to people without access. One approach is to seek funding, sponsorship or industry partnerships to source devices and give them to people. A second approach is to purchase devices and loan them to people for a fixed term, after which they can be purchased or returned. Device ownership and loaning devices both have advantages. We heard how device ownership can support individuals to feel of responsible and empowered. Those using loan schemes, typically ‘try-before-you-buy’ schemes, said they help to reduce the barriers to using technology. For example, we heard how in Stoke-on-Trent, the adult social care team has been offering older people with the least financial resource an Echo Show (a smart speaker with screen) to introduce them to a fairly simple digital technology tool. The team also offers structured support, which includes set up and some face-to-face training on how to use the technology.

We heard from organisations and teams providing devices that they had felt inclined to restrict how the devices could be used, perhaps limiting them for only health purposes. However, this was found to be counter-productive. Restricting device functionality typically makes a device less useful and potentially less valued by individuals and so increases the likelihood of it being damaged, lost or not used. It’s also important to consider that non-health care activities, such as streaming music and using social networks, improve digital skills and digital confidence. For example, we heard from a VCSE organisation Simon Community Scotland, which, in 2022, launched ‘Get Connected’ a digital inclusion programme aimed at giving people experiencing homelessness access to the digital world. The programme provides homeless people with a digital device (smartphone or tablet), 12 months of unlimited internet data and support from a trained digital champion based around a learning framework of digital skills. This helped people to use devices for many purposes including health care, music, messaging and personal calls. Many organisations providing devices agree that it is important to ensure there is some device management to minimise the risk of cybersecurity attacks or scams.

Providing data

Similar to devices, there are a number of approaches that can provide data, in the form of SIM cards, to people who need through funding, sponsorship or industry and charity partnerships. We heard about some data-donation initiatives in the community. For example, some charities, such as the National Data Bank from The Good Things Foundation and SimPal, provide people in need with data.

The challenge with providing data through SIM cards is it can feel like a cliff edge when the data runs out for people who have limited options to obtain more data particularly if devices have become integral to their lives. One option is changing to another donated SIM. However, while changing SIM cards can be a fairly easy process to administer, it still requires a level of digital skill and confidence that people may not have. Changing SIMs has a number of disadvantages for the user, such as transferring existing contact details onto the new SIM, which requires more extensive digital skills. Data provision is essential to overcome this barrier to digital services. When paired with providing people with knowledge of public internet access points, for example, in libraries, it can help to reduce mobile data use so it can go further. Social tariffs can also make home broadband a more affordable option again reducing mobile data use.

Building digital skills and confidence

Even with a device and connectivity people can still be digitally excluded if they don’t have the necessary confidence or the skills. We heard about several different approaches to support people, provide education and build confidence.

Community assets

VCSE organisations are working in the community to provide digital skills training and support to the public. They typically work within a specific community to help build confidence in tasks such as turning on devices, using email and common apps, listening to music, watching videos and using the internet. ‘Tech to Community Connect’, a programme developed by the Surrey Coalition of Disabled People, is a collaborative digital-inclusion project with two target outcomes: reduce digital exclusion and reduce feelings of loneliness. The coalition loans devices and data to disabled people alongside a full training and support package. Participants are matched with volunteer ‘tech angels’ for support. The tech angels offer several training sessions including how to use the device, how to shop safely online, an entertainment module, and training depends on agreed outcomes. A medical services module includes information on how to find pharmacy services, how to book a GP appointment, how to book a video consultation and many others. Several providers are developing partnerships between health and VCSE organisations finding it really helps with cross-fertilisation of ideas and support. These organisations benefit from working together to try different approaches to device, data and skills provision, target particular groups, learn which approaches work well and avoid duplication to make limited resources go further.

Befriending services

In some areas, there are networks of volunteers with digital skills who support people by phone or within community settings such as libraries and cafes. For example, The Roxton Practice, a GP practice in north-east Lincolnshire, has developed digital care ‘pathways’ for its patient population and has volunteer ‘care connectors’ available in public libraries to help patients become more skilled and confident in accessing their health and care via digital channels Volunteers can help people to become more familiar with digital health tools by downloading and setting up the NHS app. Volunteers can also support people to use specific NHS initiatives such as NHS@Home to measure their blood pressure, monitor their symptoms or conditions (for example, chronic obstructive pulmonary disease), collect data, and upload it..

Patient education videos

Some health professionals and organisations are creating video content to help patients navigate digital NHS services and get the best from digitally enabled care. We heard that for some people video can be more accessible and easier to understand than text-based approaches. Images can easily convey what should be done and how, for example, by showing how the NHS app should look at each stage of use or how a clinically usable picture of a rash should look. Images can also overcome literacy barriers to convey health information in a usable way. Through our workshops we heard from a GP, Dr Hussain Gandhi, who became very aware of patients being excluded from care services because of the shift to digital consultations and care during the Covid-19 pandemic. In response Dr Gandhi developed a series of YouTube videos to help patients register with the NHS app, how to register with a local GP, how to send a photo to your doctor. We also heard how staff can find existing videos or other material online to use to help people navigate digital services.

Overall, providing a device, connectivity and support are all equally important for digital access; if one of those elements fail, then attempts to improve the use of digital services and make them more inclusive are likely to fail.

Structuring services around people’s needs and preferences

Digital inclusion does not begin and end with providing access to devices, data and developing skills. People’s needs change and so you can’t assume digital services always work for an individual.

A one-size-fits-all approach or a rigid service without choice means the service is more likely to exclude people. People’s changing needs and preferences, and understanding those needs and preferences, can lead to the design of different digital options. This approach means services can flex around evolving expectations and changing patient needs. Here we highlight approaches that can help with designing and transforming services to be digital and inclusive.

Identifying people’s capability and preferences

In north-east Lincolnshire, The Roxton Practice has undertaken extensive work to understand the digital preferences of its population. Engaging with its 12,500 patients through face-to-face conversations, telephone, letter, SMS and the practice’s website, the practice asked questions to gauge people’s willingness, confidence levels and preferences for digital health care. People’s preferences were logged on the electronic patient record system and used to develop a digital literacy level for each individual. Using this level, the practice suggests digital or non-digital services for the patient, but it is the patient who chooses to accept the suggestion or request an alternative approach. Workshop participants agreed it was important to set the baseline preferences for patients, but also agreed that the baseline does not predict best care at time of need and information needs to be kept up to date. However, pairing this approach with existing links into the community, such as social prescribing link workers, is a step forward and can help inform communities’ needs and experience of health and care services.

Offering services with different levels of digitalisation

Some organisations we heard from have been redesigning services to use different levels of digital technologies within a service, creating more flexible or multiple pathways to better match patients’ expectation of choice. A single digital pathway is unlikely to meet the diverse needs of all patients and so The Roxton Practice has redesigned its services so people can move between high-, low-, and no-tech pathways for a single service. A high-tech pathway enables patients to use websites and apps on their personal devices to access services and collect and upload their own data for review by the primary care team. A low-tech pathway enables patients to use digital access points scattered across the whole community (in GP practices, libraries, pharmacies, workplaces, etc) with support from volunteers or staff onsite. A no-tech option offers face-to-face care.

This is just the start of the pathway transformation, The Roxton Practice is now researching how people on the low- and no-tech pathways use tech outside health care, eg, for online shopping or banking. By understanding why people are reluctant to engage with digitally enabled health care despite using digital services elsewhere, the practice is exploring whether community support can build confidence and trust to empower greater use of digital health care services.

Working with communities to develop more inclusive services

Inclusive digital services mean that the technology works as people expect it to with information in the preferred languages with relevant cultural context and the features they need. Workshop participants shared how involving service users and members of the public in service design and transformation has helped change services so they are better structured around people’s expectations, needs and preferences.

Simon Community Scotland provides people experiencing homelessness with access to digital devices, data and training. The organisation regularly engages with users to ensure that its digital platforms are fully co-designed and produced by the people using them. This has resulted in having information and resources that are valuable to users front and centre. Working with women experiencing homelessness who use drugs means they now have access to evidence-based information, services and digital resources that may prevent drug-related harm or death through an accessible and reliable app. Co-design and co-production were crucial in building trust in the app and the information it contains.

Another example we heard of working with people to develop more inclusive digital services is the need to reliable and up-to-date information about pregnancy – as well as the health and care support available to people who are pregnant. The Mum and Baby app was originally developed by one North West London trust as a source of information during the birth and post-natal period. However, there was a sense the app could do more to enable more choice and personalisation of care through the whole maternity journey. The app has developed through co-production with clinicians and users across the local maternity and neonatal system in north-west London and now includes input from across England to ensure it meets the needs of service users. It gives information about maternity units across the users’ area, local information about home births, continuity of carer, personalised information about the unit selected and services it provides. The app facilitates personalised care plans – covering the entire maternity journey (including an appointment tracker).

Several different approaches have been found to reduce digital exclusion by improving accessibility. For example, the Mum and Baby app is available in languages other than English, as a website for those without a smartphone or tablet, and it has a downloadable/printable version – which has undergone an accessibility review making it readable for those who have vision impairment. The app has also been reviewed to ensure it uses plain and simple language (to ensure accessibility for those with lower literacy levels).

Improving the quality and consistency of services

People expect services to be similar, but in reality often experience significant differences in digitally enabled services from a single provider or service and across the health and care system. Inconsistencies in if and how digital technologies are used across providers and services create confusion and frustration in the public. There are differences in what is offered digitally, how it is provided and how well it works.

Creating a centralised group of expertise

Some organisations are choosing to tackle digital exclusion in isolation, while others are collaborating and working in partnership. 100% Digital Leeds is a model for partnership across a city. Working in partnership with health and care organisations across the city, as well as VCSE organisations, 100% Digital Leeds supports organisations to improve digital inclusion. The ambition is to increase digital inclusion for everyone, in a way that’s sustainable and embedded within existing services. The team take a ‘furthest first’ approach, working in partnership with organisations to tackle the needs of those most digitally excluded first. The 100% Digital Leeds approach aims to ensure consistency of approach across all partner organisations and acts as a central hub for sharing learning and improvement.

Following a successful pilot programme to tackle digital exclusion, the Surrey Coalition of Disabled People was able to bring together organisations from across the health and care system in its area to collaborate to addressing exclusion. Through regular meetings they were able to develop an understanding of the services being offered and where the approaches taken increased digital exclusion. The Surrey Coalition then offered to support these services to become more digitally inclusive for all disabled people across the region. For example, Surrey Coalition was able to support the NHS@Home initiative by assisting patients to collect and upload health data on to devices, unlocking the benefits of NHS@home for more people. We also heard from NHS Black Country ICS digital leads who have been developing system-wide approaches to digital health to ensure services developed in partnership with VCSE groups and learning is built on.

A centralised group or collaboration is helpful to continually learn and apply best practice to make services more inclusive. However, equally important is acknowledging the centralised group needs to work in partnership to address the needs of particular population groups. For example, 100% Digital Leeds work with partners across the city to help them reduce the barriers to digital exclusion for the people they are working with. 100% Leeds Digital has broad knowledge and expertise but by working with partners is can better understand the issue specific groups face, co-produce solutions and then support partners to embed interventions within existing services.

Conclusion

Patients and the public face challenges relating to fundamental requirements for digital services such as devices and data, rigidity of services not meeting preferences or need, and inconsistency of approaches creating confusion. However, many areas are successfully overcoming these challenges to improve digital inclusion and meet public expectations. The solutions include providing devices, data and skills support for patients, working with communities to understand and meet their preferences and needs, and collaborating across organisations to create a centralised group of expertise to improve best practice and its application in all services. By exploring and applying the approaches outlined above in detail integrated care systems and providers can significantly improve digitally enabled services and mitigate widening inequalities.