Who do we include in co-design?

Academics talk about “vulnerable groups” based on ethics approval language. But what they mean is, people who have difficulty participating because they have a disability, illness, or some other condition. Indeed, some ethics requirements are so protective of “vulnerable groups” that they make it difficult to include them from research projects. Consequently their voices are silenced. So how do we include them in co-design and when?

While co-design is the new buzz word, participatory design has been around in academia for many years. Involving communities in decision-making is now recognised as being responsive to community needs. That means going beyond a one-size-fits-all approach to design. 

Participatory design

Participatory design, or co-design, is about genuine inclusion. That is, not just informing the design, but being participants in the design process. However, involving people with complex needs poses some challenges. It’s easy to make assumptions about their capacity to participate and collaborate. However, this comes down to the way the participation process is designed. 

Participatory design and the inclusion of vulnerable groups is the topic of an article from Finland. They use three projects to compare how participatory design might work best. The first explored co-design activities with people with intellectual disabilities living in supported housing. The second focused on culturally diverse young people experiencing crisis situations. The third dealt with nursing students with learning disabilities adapting to work in the health sector.

Challenges and power dynamics

The article covers the challenges, the power dynamics and their methodology. Each of the three projects is documented in detail. The findings show some similarities between the projects, but when it came to users, there were different outcomes and processes. Participatory design became more challenging when there were more pronounced differences in power dynamics.

These three projects provide good information for involving vulnerable groups in participatory design processes. Questions of equality and genuine inclusion is about both the design activities and how the entire project is planned. 

The title of the article is, Whom do we include and when? participatory design with vulnerable groups

From the abstract

This article makes three contributions to participatory design (PD) research and practice with vulnerable groups:

1. 1. A framework for understanding stakeholder engagement over the course of a PD project.
   2. Approaches to making user engagement and PD activities more inclusive.
   3. An analysis of how the design and power dynamics of PD projects affect vulnerable groups’ participation.

A map of engagement evaluates stakeholder involvement from initial problem definition to design outcome. 

The first looks at codesign activities to support decision-making in the context of intellectual disabilities. The second looks at culturally diverse youth navigating crisis without adequate assistance from public services. The third examines nursing students adapting to work in the health sector without accommodations for learning disabilities.

Comparing the projects reveals patterns in project planning and execution, and in stakeholder relationships. The article analyses how users are defined, engaged and supported in PD; how proxies shape vulnerable groups’ involvement and PD projects as a whole; and opportunities for greater inclusion when the entire PD project is taken into account.

What does co-design mean? How does it work?

The term co-design is being used more frequently, but what does co-design mean and how does it work? Well, that depends on the context. It could mean a design group working together. Nothing difficult about that concept. Or it could mean involving end users in the design process. This is where it gets more tricky and more questions arise.

At what point do you involve users? Which users do you involve? Will the users have the required knowledge and experience to contribute constructively? Will designers have the skills to be inclusive and listen to users? Participatory action research incorporates both designer and user learning. But these projects are necessarily long and usually have research funding attached. However, they usually produce knowledge and results useful in other settings. 

A related concept is co-design in quality improvement, for example, in a hospital setting. Both staff and patients have a role to play in advancing quality improvement. Differing levels of understanding between staff and patients can lead to tokenism. So how can we equalise knowledge so that everyone’s contribution is constructive? 

A research team in a Brisbane hospital grappled with this issue. Their research report is written in academic language and not easy to read. Nevertheless, they conclude that effective patient-staff partnerships require specific skills. Briefly, it means adapting to change, and generating new knowledge for continuous improvement.

A framework

The researches developed a framework that includes ten capabilities under three key headings. 

1. 1. Personal attributes:

• • • Dedicated to improving healthcare
    • Self-aware and reflective
    • Confident and flexible

2. Relationships and communication attributes:

• • • Working and learning as a team
    • Collaborating and communicating
    • Advocating for everyone

3. Philosophies/Models:

• • • Organisational systems & policy
    • Patient and public involvement best practice
    • Quality improvement principles.

These nine points are connected with the overarching theme of sharing power and leadership.

Title of the article is, “Co-produced capability framework for successful patient and staff partnerships in healthcare quality improvement: results of a scoping review”.

Other posts on co-design include The right to participate and co-design, and Co-design is another skill set.