4-minute read

What do we mean by tokenism and co-design?

The people using heath and care services are most aware of what they need, what works and what needs to be improved.

Many programmes and services have typically not included service user comments in the redesign of existing services or the creation of new ones. This is because the way we describe this inclusion of user thoughts and opinions, continue to be understood and used in a variety of ways.

Insight; lived experience; participation; consultation; service user voice; engagement; involvement – all similar terms, yet there’s no agreement on what this means in day-to-day practice. This results in mixed messages to both service users and the people researching or designing them. When there’s ambiguity surrounding the level of user participation in the design, programmes and services end up incorporating only a ‘token amount’ of user input.

Health and care programmes are, and should be, measured on target audience participation and on their outcomes. If the people for whom the programme is designed don’t believe it will help them, because everything in the programme is predefined, then this will negatively impact the outcomes of the programme.

We believe co-design[1] involves significant engagement with, and empowerment of, individuals with lived experience. It means placing the contributions from people using services on an equivalent level with, or even above, those who work in a system. This allows co-design to work to its potential and for a greater level of impact to be had.

Why is it important to listen to service users in developing interventions?

People who have lived experience and/or have experience using of a formal service are the experts. They know what works, or has the potential to work. Therefore, re-imagining their role and placing greater importance of their voice is key. Seeing them instead as experts and leaders with excellent insights, rather than just system users playing one small part.

During the pandemic, the use of virtual groups has improved accessibility and has enabled more individuals and organisations to meet and share knowledge or experiences. Expectation for co-design and user involvement for health services has, rightly so, increased as excuses for poor accessibility have diminished.

True co-design involves a shift in power dynamics. It allows people with lived experience to gather alongside professionals, and lead on developing viable solutions together, while simultaneously challenging systemic, institutional, and individual stigma.

How can we apply this method in clinical or community-based intervention programmes?

By gaining significant involvement from individuals with lived experience of the health condition in question. Whilst this may sound simple, it’s hard to achieve in practice. If people with lived experience make up a minority of a co-development group, and the language used is professional/clinical, then it’s still just a focus group.

Creating an environment where people with lived experience can design from the get-go and encourage disagreement with ‘professionals’ is key to unlocking new perspectives and getting great insights. Creating a space for deep understanding will ultimately change your co-design session from being tokenistic to one that meaningfully engages with people. The key principle to work from in these sessions is that the knowledge gained and the data gathered will be used to develop and enhance evidence-based supports, services, communities and networks. Also, it is important to remember that each approach will change from one individual to another due to varying individual and community need.

Additionally, having people with lived experience create your engagement approach and help determine outcomes measures are just a couple of ways in which co-design can help your programme thrive.

Examples of great co-designed programmes

Hope Programme for Long COVID – Example 1:

The impacts of COVID-19 have resulted in more people struggling with their mental health than ever before. Led by Coventry University, this new initiative set out to provide ‘urgent support needed to support ‘long haulers’ wellbeing. In essence, it is a bespoke, co-designed, digital, peer-supported pilot programme aimed to meet the specific needs of people living with Long COVID.

This programme, which enabled people to self-manage common symptoms such as fatigue, reported great early success. Although the programme is still in the initial stages, early data indicates a 16% improvement in mental wellbeing and according to one participant: ‘confidence to self-manage’.

“Hearing about your previous courses and how you involve patients in the design process, it really made me trust the team. It’s so important.”

- participant from the Hope programme (2022)

Co-Creating Health - Example 2:

Co-Creating Health is a programme which enhanced the clinician-patient partnership in diabetes, COPD, depression, and musculoskeletal pain within the UK health system from 2007-2012.

Three key principles were used to judge participants’ level of involvement with the initiative, including ‘giving people with long-term conditions the skills, confidence, and support to self-manage’ and ‘helping clinicians to develop the skills, knowledge and attitude to support and motivate people with long-term conditions’. 

The intervention also saw several positive impacts achieved, for example, areas in London experienced fewer specialist doctor appointments being booked, as well as lower rates of anxiety or depression amongst participants. Furthermore, individuals with diabetes saw improvements in their overall quality of health.

“Within the first few minutes I knew it was different from everything I’d tried before. […]that was the first time I’d seen someone with a situation or a condition like mine, helping to change other people, and I was so impressed.”

- participant from the Co-Creating Health programme

The benefits of co-design

Programmes co-designed with individuals with lived experience can be used as a quality improvement tool. The aim being to achieve greater impact and better outcomes for the people we work with. From a system perspective, it can help to ensure services are aimed at and delivered to the right people at the right time, reduce long-term costs, and reduce stigma.

Other research highlights the potential benefit of increased inclusivity within healthcare and tackling complexity. For people with intersectional experiences and complex medical histories, it is more important than ever before to be ready to respond. Far too often they have been excluded, resulting in higher burdens and lower health outcomes, such as reduced life expectancy.

By integrating user experiences and thoughts from the start, people get the services they need and the benefits that were always intended at the concept stage.

Habitus specialises in creating programmes that use co-design as their core principle. We also are accomplished in helping organisations get wider community participation in their projects.

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[1] Co-design is the process of meaningfully engaging and working alongside people with lived experience to develop a mutual understanding of their experiences and challenges as it stands today, as well as develop a shared vision for a future state.
Participants are invited to share stories of their experiences, challenges, and barriers in order to identify what needs to change or be created. It invites people with lived experience to work alongside system players to create new processes, workflows, or services to improve the outcomes of people with lived experience, and the impact of those services.