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Designing inclusive and trusted digital health services with people and communities

The shift towards digital

Technology plays an increasingly important role in our health and care system. It allows us to consult specialists and receive care from home, order medications using our phones, and receive new digital treatments – and this is just the start. With Lord Darzi’s recent independent review of the NHS in England emphasising the importance of a ‘tilt towards technology’, the government’s intention to shift from analogue to digital, and exciting developments in technologies (such as artificial intelligence, virtual reality, and miniaturisation of diagnostics), the use of data and digital technology in our health care system is only going to grow. Increased use of digital tools provides an unprecedented opportunity to apply modern approaches to understanding patient needs and behaviour to the NHS. In future, digital tools could be used to gather sophisticated insights to better tailor services around specific groups

The challenges of digitalisation

This shift towards technology can, and should, be positive; technology can drive change, facilitating better patient outcomes and experiences. However, NHS patients struggle with aspects of digital health care, such as having multiple apps with siloed records, fragmented digitalisation, a lack of digital options, and insufficient accessibility features. Current digitalisation and transformation approaches often fail to adequately involve users in service development, leading to unmet needs and expectations.

The journey of digitalisation based on greater patient insight should start with addressing digital exclusion, which is influenced by multiple factors. In 2023, The King’s Fund identified three essential elements required for individuals to begin using digital public services: an electronic device, connectivity data and the necessary skills and confidence. Those in more socio-economically disadvantaged groups, socially excluded groups, or older adults can struggle to access care. 8.5 million adults lack the most basic digital skills, and 2.4 million households struggle to afford their mobile contract. Research shows that 16% of those offline find the internet too complicated and 13% are concerned about data and privacy. For digital services to be truly inclusive, they must serve the populations they are designed for, work as expected and be trusted by both users and staff.

About this project

This project was supported by the Health Foundation. The views expressed in the report are those of the authors and all conclusions are the authors

Designing inclusive digital tools by engaging people and communities

Taking practical action to address the fundamental barriers to digital inclusion is essential but needs to be combined with building public confidence in, and support of, digital solutions, which is crucial for the success of increased digitally enabled technologies. Previous work from The King’s Fund showed that it’s not just people who are digitally excluded who struggle with digitally enabled services but also those who are more digitally confident. Getting these services right means listening to and acting upon the voices of patients and communities.

Unfortunately, designing services with user involvement isn’t routinely done; the NHS doesn’t excel in listening and acting on patient voice. Lord Darzi’s recent investigation into the state of the NHS highlighted that the patient voice is not sufficiently heard, contributing to challenges faced by the NHS. It revealed a decline in patient satisfaction, an increase in complaints and a reduction in patients' empowerment to make decisions about their own care. To address these issues, the investigation suggests re-engaging staff and re-empowering patients.

'…the NHS could do better at involving real experts (those living with an ongoing health condition) in how care was provided.'
Lord Darzi, Independent Investigation of the National Health Service in England

Engaging a range of people in the design of digital services presents specific barriers: digital exclusion makes it challenging to engage with all groups, some technological aspects of digital services can feel complex or intimidating for people to engage with, and data privacy concerns can deter people from engaging with digital services or their design. Recent polling data from the Health Foundation shows that those in lower socioeconomic groups are significantly less willing to shape technology use in the NHS than those from other socioeconomic groups.

Our research and our findings

These unique challenges make it difficult to involve users in digital service design. However, teams across the UK are developing promising approaches to overcome these challenges. We wanted to understand the skills, knowledge and capabilities needed for health and care systems to do this well. We reviewed literature and drew on experiences of those already working to engage with people to design digital services (see Methods section for more detail).

While there are notable examples of those doing user involvement well, many digital services are designed without it, highlighting how important it is to showcase how to do it in practice. Some elements may seem familiar to those used to involving users in service design. However, the digital aspect presents specific challenges, which must be overcome if the shift towards a more digitally enabled health system is to be a positive one rather than one that widens health inequalities. We highlight five key areas to ensure digital services are created collaboratively with and for people. It is crucial that these elements are considered collectively so that services can be designed well from the outset to avoid disillusionment. We outline how the NHS needs to:

  1. avoid tick-box engagement and make it meaningful

  2. balance the power dynamics

  3. provide staff with support to do engagement well

  4. not let a constrained system discourage good engagement

  5. make meaningful engagement a sustained reality

We have outlined the role of national leaders and ICB leaders in our policy brief.

Varying terminology is used when talking about engaging people and communities

Engaging with people and communities is often described using terms such as co-design, co-production and human-centred design. Approaches like citizens' assemblies and public deliberative methods are also recognised methods, and different approaches will fit different contexts and circumstances. These terms are often used interchangeably, which can be confusing, but ‘despite inconsistency in terms, a common principle underlines all methods of co-production: “nothing about us, without us”.’

We advocate for using a range of approaches to listen to and learn from people and communities and do not prioritise one definition over another. Instead, we believe the effectiveness of such work should be judged by the intent and commitment behind it and the outcomes achieved, rather than the specific terminology used.

1. Avoid tick-box engagement and make it meaningful

Services often fail to meet user needs because of a lack of meaningful user involvement. Time and budget pressures can reduce engagement to a rushed tick-box exercise that uses small groups or non-inclusive methods. Meaningful engagement helps organisations develop services that truly reflect users’ needs. Below we discuss five elements we have seen to be key to supporting this.

Reach out to communities to engage with a broad range of people

Digital service design often fails to gather a wide range of perspectives, particularly from those who are digitally excluded. Reaching out to representative organisations and trusted intermediaries and joining existing gatherings can provide insights into different communities and facilitate connections with individuals who may otherwise be missed. For example, 100% Digital Leeds (a council-led programme working to reduce digital exclusion) learnt that arranging engagement sessions to enable people to use the NHS app failed to attract participants. They realised that these sessions were not appealing, so attended existing community group social events, such as coffee mornings, instead. Introducing conversations about digital services in more informal and familiar spaces led to greater willingness to engage.  

'Communities know absolutely best about how to manage these conversations… finding people that are respected and representative within their communities, they are really, really good at starting the conversation… you've got to meet people where they are. You can't expect them to come to you.'
Case study participant

Ensure people feel valued throughout participation

It is important to establish what participants need to feel valued. It may be payment or being involved in decision-making, but working together to agree what’s possible helps build trust between staff and participants.

‘Closing the feedback loop’ helps participants feel valued. This involves actively replaying back what was heard during engagement, interpreting user needs and outlining the potential solutions. Doing so is particularly important in cases where users' desired outcomes weren't achieved and can build trust and encourages ongoing engagement, which is crucial in iterative digital service design. Regularly gathering feedback using a range of methods, such as regular check-ins, surveys or focus groups, can also help address evolving needs.

Ensure materials and engagement methods are as inclusive as possible

Digital technologies can be complex, so technological content should be made easy to engage with and jargon or complex terms should be explained clearly, particularly as for some the fear or hesitancy towards technical topics (eg, data privacy) can hinder engagement. Materials should also be as inclusive as possible and, where possible, should be tested before use. For example, Heart N Soul, a creative community and arts charity, designed an AI system to help people with learning disabilities and autism communicate better with health professionals and services. They worked on training AI to rewrite complex NHS letters. The process was made inclusive for all participants, including those with lower mobility levels, by using red and green buttons that enabled users to indicate whether they could or couldn’t understand NHS letters.

Build in time and space to be flexible in your engagement approach

It is important that everyone is supported to engage and offered a range of digital and non-digital options to do so. While many case studies used in-person meetings, some employed hybrid engagement or alternative methods such as messaging groups or voice notes. Providing options requires a flexible engagement approach but is important for supporting those who have different requirements to be able to engage. Specific sessions and support to engage certain groups can facilitate more meaningful participation. For example, in one of their projects to understand what terminology to use around patient data, Understanding Patient Data (an organisation aiming to make data easier to understand more trustworthy) found it helpful to engage with people who are less trusting of data in separate groups so that they could tailor their engagement and better understand their needs and perceptions. Additionally, those who are digitally excluded may need extra support to engage. For example, the work 100% Digital Leeds have done to signpost to resources and basic digital skills support has helped organisations to engage with those who are digitally excluded, and in Hounslow, digital champions supported those who are most likely to be digitally excluded to develop their digital skills and confidence.

Use prototypes to facilitate engagement

In discussions, digital services can feel abstract, which makes it difficult for participants to understand what they are providing feedback on. Providing participants with prototypes, drafts, or examples can help them visualise what is being created and support meaningful participation. NRAS (a charity supporting those with rheumatoid arthritis) and Cohesion (a technology company working with NRAS to design a patient app) found that using prototypes as part of their engagement work helped people to conceptualise the improvements that were being discussed, facilitating interactivity and making it easier for people to feed back their thoughts.

2. Balance the power dynamics

Power imbalances are a common barrier when it comes to involving users in service design. Job titles, funding control, decision-making authority, and even badges indicating organisational affiliation can create an ‘us and them’ dynamic, hindering meaningful engagement. This is particularly pronounced in digital service design, where complex or unfamiliar technological aspects of digital services can create a divide between those who are leading and participating in design and those who are less digitally literate, leaving some people feeling unconfident about taking part. To ensure that everyone’s perspectives are heard and considered, power dynamics must be acknowledged and mitigated. Below we outline four considerations that we heard are crucial when it comes to involving users in a way that minimises power imbalances.

Engage with people right from the start

Key to sharing power is making sure people are involved right from the start of a project, rather than being consulted on a predetermined solution. This is particularly important in digital contexts, where services can involve more complex functionalities and where users might feel more disconnected from the development process. This makes engagement less tokenistic, fosters a sense of ownership and builds trust in both staff and communities.

'Everything we were doing was coming from really having listened and taken the time to build relationships with people and understand what was really important to them and then to act on that. What happens so so often is that we have an idea and we say, 'This is what needs to happen' to people.'
Case study participant

However, user input must also be balanced against practical constraints and aligned with existing NHS strategies and policies. Ideally, this input would align national or regional priorities with local needs, though tensions between these levels must be discussed transparently with people, and senior leaders can be involved to navigate them.

'We were also clear about what was up for discussion and what wasn't in terms of, like, what we could influence and what we couldn't. So, while we ask the participants about their preferences, we couldn't say that all of [the solutions would] suit what everyone wanted.'
Case study participant

Meet people ‘where they are’

Requiring people to engage in ways that are more convenient for the provider organisation (for example at NHS locations or online) can reinforce power dynamics or hierarchies, making the experience uncomfortable or exclusionary for participants. Instead, ‘meeting people where they are’ in environments familiar to them and, where possible, working with a trauma-informed approach, being aware that people bring different life experiences , can help those designing services to better understand the unique challenges or needs of different groups of users.

For Thrive by Design (an organisation focused on tackling digital health inequalities), a key part of their success in designing digital perinatal support services with Traveller communities in West Yorkshire was the way they built trust and shared power. They built trust by working with the communities in their local settings and participating in important community activities, such as flower arranging and coffee mornings. They addressed power dynamics by removing organisational badges – reducing the idea of ‘us and them’ – using inclusive communication methods and working as equals right from the start of the project.

'Meeting people rather than people having to meet the services. It's almost like you take the service out of the way a little bit, and take the digital out of the way, and go on what's going on for these people within these communities.'
Case study participant

Facilitation by intermediary organisations can balance power dynamics

Power dynamics are impacted by how people are brought together and how collaborative work is facilitated. When provider organisations such as the NHS lead service design, it potentially signals that the provider has a position of authority in the process and hinders open engagement. Instead, it can be beneficial for an external or representative community organisation to facilitate the process – ‘it helps using a third party who don't have skin in the game’. Although it may be daunting for staff to relinquish power on projects (perhaps due to factors such as reporting requirements or other external demands), collaborating with intermediary organisations can enhance equality, improve trust and mitigate the impacts of uneven power. For example, Thrive by Design partners with community organisations such as Leeds GATE to empower individuals and ensure their voices are heard, making their projects more responsive to community needs.

Consider the dynamics between all people in the group

Internal power dynamics within groups, influenced by factors such as age, race, region, socioeconomic group or gender, can affect how openly participants engage. To mitigate some of these influences, groups can be engaged separately. NRAS and Cohesion found that when developing an inclusive smartphone app, power dynamics between different groups of clinical staff affected their openness and honesty during participation. They realised that this limited the engagement’s effectiveness and decided that in future they would engage groups of staff separately to account for staff hierarchies.

3. Staff need support to do engagement well

For engagement work to be successful, or even possible, staff need to be prepared and able to work with people and involve them in service design. However, user involvement is not typically seen as ‘business as usual’ and requires a range of skills and capabilities that staff may not previously have had the support or opportunity to develop. Therefore, staff must be supported by leaders, and equipped with the confidence and knowledge as to how best to engage diverse groups, communicate effectively and facilitate interactions. Below we outline four factors that are important for helping staff develop the skills needed to engage effectively with users.

Provide training on engagement methods

Engaging people in service development can differ from people’s usual work, so training on different engagement methods and how to use them can empower staff and build their confidence. To bring staff together and understand the methods to develop an inclusive smartphone app, NRAS found it helpful to use a logic model from the Health Foundation as a common frame of reference for how the work would be done and what the success measures would be.

Support staff to develop facilitation skills

During participation activities, disagreements may arise, some voices may be louder than others, and some people will be less active, particularly in digital service design where some people will have less digital literacy and confidence. Therefore, it is key that staff develop facilitation skills. To support a diverse range of inputs, facilitation must be emotionally intelligent, culturally sensitive and inclusive. Active listening and clear communication can help staff understand users holistically. Strong facilitation can navigate tensions and disagreements while fostering inclusive contributions, and where necessary can be supported by external independent contributors.  

Support staff to be confident in having conversations about digital inclusion

Sometimes, staff themselves may not feel confident in using digital services, or understand how they can benefit patients’ care, so involving users in design processes might feel daunting. To support clinical staff in discussing digital inclusion, 100% Digital Leeds provide digital skills training and training in the digital solution itself, a list of questions that staff can draw on during engagement work, and a list of external organisations that staff can signpost people to if they need extra digital support. Ensuring staff feel prepared and comfortable to engage with people who are digitally excluded is an important step in this type of work.

'It's... not just the patients, there's a huge gap in the workforce in the [digital] skills needed. So that's also a barrier to delivery [of digital services] sometimes.'
Case study participant

Provide leadership support and reassurance

We heard how leadership support can create psychological safety for staff in doing this work. It is important that leaders emphasise the importance of engagement work and encourage staff to develop engagement skills. For example, Thrive by Design highlights the importance of a ‘curiosity’ culture, where staff are encouraged to be comfortable to ‘not know the answers’ and have creative freedom when thinking about solutions in service design. Leaders can support this by legitimising and protecting time spent on talking to users as part of everyday work, and by encouraging a progress mindset, where making small changes to increase the inclusivity of services are as valued as large service redesign.

4. Don't let a constrained system discourage good engagement

Time and funding are major constraints in the health care system, making user involvement challenging. However, during our work, we heard how good engagement is still possible within these constraints. Sometimes, though, these constraints mean that engagement work must be limited to what is feasible rather than what is ideal. Here we outline what this looks like in practice.

Streamlining engagement

Drawing on engagement work that has already been done by charity, voluntary and representative community groups is one way of saving time and money. Additionally, maintaining ongoing links and networks with communities and gathering continual feedback (for example by visiting community centres or asking people about their experiences of services) allows for quicker engagement when developing business cases or funding applications, streamlining the engagement process. Although this work still takes time, engaging with people on an ongoing basis ensures that when service design opportunities arise there are already insights into what may be needed to change.

'It's figuring out what's the minimum infrastructure you need to keep something like this going and how to shorten the processes around procurement while still doing it properly and fairly. If you have that infrastructure available and some kind of framework that has some of your key partners involved, you might be able to start things quicker and have more of a useful conversation at a good point in time.'
Case study participant

Prioritise where to spend time and money

In a constrained system, it is not possible to engage everyone, for everything, all the time. Instead, a continual improvement approach prioritises ‘progress over perfection’, and allows for service improvements even within limitations. A combination of organisational, system and local health data can help with prioritisation, for example whether to engage with certain groups or focus on specific issues. Alternatively, it can be beneficial to decide with service users themselves what to prioritise and what the focus should be.

'Funding is challenging, but actually we realise that you can lever large impact even with small amounts if you move the pivot point to the right position.'
Case study participant

Partnership working facilitates agile and holistic service design

Designing digital services requires both a deep understanding of user needs and technical expertise, so sometimes those working with users may not have all the skills to fully incorporate users’ needs into service design. To streamline the process, collaborating across organisations and teams can create more comprehensive skill sets and knowledge bases. For example, when developing a remote smartphone app to support people living with rheumatoid arthritis, the charity NRAS partnered with Cohesion and the NHS over 12 months. NRAS brought strong community links and in-depth understanding of lived experiences, NHS partners brought expertise around the disease and its treatment, and Cohesion brought technical skills and understanding about the regulatory frameworks. This partnership allowed for agile working that effectively incorporated users’ needs into the app.

5. Make meaningful engagement a sustained reality

Often, engagement with people and communities is carried out in silos and on an ad hoc or project basis. This leads to activities being repeated and essential knowledge and expertise getting lost when staff leave at the end of a project, making it harder to respond to funding opportunities and deliver engagement work rapidly. Compared to other services, digital services require more frequent iterations of improvement and cycles of development, which makes finding ways to sustain engagement work particularly important. Below we outline three key considerations for sustaining user involvement.

Establish ongoing rather than project-based engagement

Leaders can help sustain engagement by providing ongoing training for staff, protecting annual funding for ongoing engagement, and establishing frameworks, partnership agreements and ways of working that allow for rapid collaboration when opportunities arise.

'This is a marathon, not a sprint… we're just making it a business-as-usual activity.'
Case study participant

Streamlining processes to implement user feedback can help maintain public engagement, which is particularly important as rapid cycles of development are often needed for digitally enabled services. This includes incorporating the public's voice into business cases and procurement processes through updated staff training and workflow processes.

Shift commissioning to be outcomes driven rather than process driven

A frequent issue with engagement work is the lack of space to listen and respond to people, often resulting from commissioning that focuses on tick-box milestones and metrics  (eg, the number of engagement activities) rather than whether the outcomes are meaningful. Shifting the focus towards an outcomes-driven approach can create space to listen to people and help maintain user involvement. This approach does not mandate specific activities but instead sets the fixed constraints (such as service scope, timelines, funding, or inclusion considerations) and leaves the details of when, how often, and where to engage to staff discretion. Project management is essential for service development initiatives to succeed on time and within budget, but ways of working can be altered to shift the focus from milestones to outcomes.

'You tell the funder: 'Look, you're gonna fund us. You gotta trust us. We have a track record'… You can't always know what the milestones are going to be like. Sometimes, yes, you're delivering a very specific project, but I think if the funder is so rigid, they've already decided what the project is, and they just want someone to deliver it.'
Case study participant

Involve service delivery staff in engagement work

Leaders and clinicians can play an essential role in promoting and championing digital service take up. They must also trust the digital services themselves because staff trust enables patient trust. Involving staff in the design process is crucial, as ‘engaging stakeholders in the process builds a coalition for change’. When funding is allocated to involving leadership and clinical staff in engagement work, or better yet equipping staff with the capabilities to engage people themselves, it can create a better understanding of patient needs and preferences, in turn fostering internal buy-in for service changes, thereby embedding the process.

Generate leadership buy-in to sustain resources

One of the biggest challenges when it comes to sustaining user involvement is securing adequate and ongoing resources. Active leadership support is pivotal for enabling ongoing engagement and capability development. Leaders with budget oversight can specify a baseline budget for engagement work each year. For example, in North Yorkshire and Humber, a leadership team member has allocated and protected 10% of all digital funding for engagement with people and communities. This approach requires leaders to recognise the importance of local engagement and protect budget allocations for this purpose, but if achieved can ensure sustainable long-term engagement.

In summary

If digitally enabled services are to improve health care experience and outcomes they need to work for people by listening to and acting on the voices of patients and communities. Engaging with people and communities is crucial for creating digitally enabled services that are inclusive and trusted. In doing so they can help to reduce, rather than widen, inequalities.

Maintaining users’ involvement in digital service design is vital. Aside from notable exceptions, we learnt that users are not routinely involved in service design. This is a critical issue as more and more focus is placed upon digital health care. The key aspects of inclusive service design outlined above may feel obvious to some, but unless organisations invest in developing the necessary knowledge, skills and capabilities for meaningful participation, we risk further excluding users from health care.

In reality, there is often insufficient funding or time for deep engagement, and existing services or priorities – whether regional or national – can create tensions and disagreements. Engagement and outcomes may be imperfect but where priorities are made and an improvement mindset is taken, inclusion and trust in digital services can still be increased. Staff and leaders should prioritise pragmatism over purism when it comes to engaging people and communities in service design and improvement.

This work highlights what is needed to improve patients’ voices to create accessible and trusted digitally enabled services today. As we look to a future that is more digitalised and has greater access to, and use of, data it will be possible to leverage digital’s unique capabilities to better tailor technology and services around people’s needs. The principles of engagement will remain, and improving user involvement in digital service design will ensure that services are inclusive and supportive of better health as we move towards a digitally enabled health care system.

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