Language

Lots of terminology used in research, design and evaluation is not familiar or accessible for the general public.

Language is a big barrier to involvement and engagement (Health Consumers NSW, 2017).

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Limited sector collaboration

When different groups doing co-design are not coordinated, people with lived experience may manage requests from multiple organisations.

That can be overwhelming, confusing and lead to disengagement.

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Co-design as an add-on

Co-design doesn’t work when it is treated as an add-on to an otherwise full workload (Boyd et al, 2012). Implementing effective co- design can be challenging when workloads are high and organisations are fiscally constrained.

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Lack of follow-through

Participation is fragile and damaged through poor or no follow-through.

We shouldn’t ask people’s views without an intention to act.

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Clinical culture

The beliefs and attitudes of clinicians can be a significant barrier to co-design. Gaining clinicians understanding that their experience treating patients is not the same as the patient experience is important in learning to appreciate the value of lived experience.

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Lack of reciprocity

It’s easy to disconnect from a relationship when there is no positive feedback.

Giving and receiving builds trust and fosters mutual respect.

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Lack of transparency

Organisations often fail to share their constraints with co-designers, leading to the creation of bold concepts that are impossible to deliver, bringing frustration and disappointment.

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Availability

People with lived experience have lives outside their experiences and are not always available. Motivation can be a problem and travel difficult. Because so much research is conducted with so few people, those who are willing to engage may experience research fatigue (Clark, 2008).

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Boring methods

Many people are unexcited by the prospect of attending a focus group, workshop, or taking a survey.

That is made worse through limited knowledge or practice of engaging and creative methods.

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Lack of accountability

When people are asked for their views, decision-makers should be accountable for showing how those views were acted on. Most often, people with lived experience cannot easily call organisations to account. Showing evidence of action is an important part of addressing the power imbalance between professionals and people with lived experience.

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Over-use of reps and panels

Engaging a small number of representative service users/panel members often fails to provide insight into the experiences of those most marginalised and least connected.

Use representatives and panels sparingly. Instead, focus on engaging people with lived experience relevant to a project, and those who experience significant disparity.

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People with lived experience can face significant barriers to participating (low self-efficacy and self-image, transport, availability, motivation etc.). It’s often those more able to navigate the system who are engaged and re-engaged.

Creating accreditation schemes or professionalising lived experience can create further barriers, marginalisation and distort insights.

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Bureaucratising participation

Research culture

The beliefs and practices of many researchers is often the most significant barrier to effective and meaningful engagement (Health Consumers NSW, 2017).

Some researchers that have contact with people with lived experience believe they are able to speak on behalf of them, and don’t think they need to be involved beyond ‘participants’.

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Unclear roles

Participation can often be unclear and ambiguous. People with lived expeirence can feel unsure of how and what to contribute. As a result their contribution can feel less meaningful. When a person understands what is expected from them, as well as how they can contribute, it makes it easier to deliver on that and understand their role (Health Consumers NSW, 2017).

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New ideas vs evidence

Co-design must ground ideas within existing evidence. It cannot just ask people for new ideas and then implement those ideas. To support co-designers to draw from their own ideas alongside evidence, facilitators need to integrate relevant evidence in inclusive ways (Sanders and Stappers, 2006; Postma and Stappers, 2006).

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Ad-hoc co-design

Ad-hoc approaches often fail to engage people, can appear disorganised and often lack value.

When people aren’t engaged early, their experiences and requirements are seldom taken into account (beyond assumptions made by others).

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Unchecked power

In unequal power relationships, groups with more power hold and control sources of power, and people with less power tend to be more aware of the ways in which power is held and controlled.

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