We’ve heard about how powerful partnering and co-design are in driving real change – but where do we start? And how do we do it well? Run by lived experience consumers and Safer Care Victoria’s co-design and consumer team, this interactive workshop held during Giant Steps 2022 aimed to build capacity and inspire interest and curiosity in co-design.
A consumer panel and group activities immersed participants in the real-life potential of partnering to develop solutions that meet the needs of the people they’re impacting. The workshop perfectly embodied an organic sentiment that gained traction during Giant Steps 2022 – faster alone, further together.
What is co-design?
Co-design is a partnership involving shared decision making between people with lived experience and stakeholders with professional expertise. It involves people that are most affected by a design or decision working together. These people could be healthcare consumers, community members, staff, or partners. Co-design embodies the idea of nothing about us without us.
“Co-design is about shifting the dynamics, so everyone has a voice. Bringing the lived experience into everything we do and making sure the consumer has the space to contribute,” said Kris Pierce, Co-Chair CAC RCH and Consumer Lead, Kids to Adults Alliance (UNSW), Royal Children's Hospital and Kids to Adults Alliance (UNSW).
To create a solution that serves everyone, we need to include everyone. This means enabling contributions from people from all cultures, genders, sexualities, abilities, ages and spiritualities. Co-design draws strength from diversity – the differences in who we are, our experiences and how we think. The diversity of each partnership means that no two co-design projects will be the same.
Why is co-design so important?
Co-design enhances participation and partnerships. Better outcomes are achieved when consumers work together with health services and government. Co-design has the capacity to create innovative ideas to improve systems, services, and solve complex problems.
“When co-design works well, hospital staff have a better understanding of the needs of patients and families, and consumer representatives gain a greater understanding of how the health system works,” said Tracy Stanley, Support Manager, Victoria/Tasmania Division at HeartKids.
There are many benefits to partnering. For consumers, it can mean better policy, services, products, and better healthcare experiences. For healthcare providers, it creates a clearer picture of the system, including barriers people face and how they’re affected by decisions and services. These are just a couple of examples. The myriad of benefits will differ from project to project.
“Our input is invaluable in providing the consumer's perspective. Sometimes health professionals are too focused on the process and need to be reminded of the issues and journey that consumers experience,” said Tracey.
How do we do this well?
The team shared a list of mindsets from Beyond Sticky Notes that contribute to a successful co-design process. These centre around authentic engagement, i.e. valuing, supporting, and elevating diverse voices and perspectives.
“One of the key components is to be authentic. If you are not authentic in your engagement, the consumer will feel this, and it will lead to them not feeling valued. All members of the committee or project need to feel part of a larger team,” said Kris.
Taking the time and effort to build relationships and nurture a safe space for people to share their views is also key. Activities such as Dan’s Munch and Yarn, where people can get together over food, are instrumental in helping people learn about each other and their individual communication styles.
“Successful collaboration comes from ensuring everyone feels welcome, feels they are valued, and they can openly share their perspectives. Great partnerships come from strong relationships and shared understanding,” said Dan Ussher, Consumer leader.
Here is the consumer panel’s advice on the six mindsets for successful co-design.
- Get curious. And stay curious. Use empathy when working with others and get inspired by the stories they share. Question your own assumptions. Why am I disagreeing? What part and why? Don’t fall into the position of being an expert.
- Value many perspectives. Understanding diverse views helps uncover the systemic causes of issues and overlooked resources within people, families, neighbourhoods, organisations, and systems.
- Elevate the voice and contribution of lived experience. Too often we speak about people, instead of speaking with them. Telling our story often isn’t enough. Sometimes we want a seat at the table, and we must make more seats available.
- Show hospitality. Be a great co-host. Our capacity to care about others, be present and pre-empt others’ needs affects the quality of our relationships. There is no co-design without relationships.
- Sit in the grey – uncertainly is okay. We need to grow our willingness to be uncomfortable, unclear, and confused while learning, then opportunities emerge.
- Learn by doing – play with it. Even difficult topics can benefit from some serious play. Don’t feel guilty about suggesting something outrageous. Run a thought experiment and ask, what if?
- Nina Mulvey - Senior Project Officer, Co-design and Consumer team, Safer Care Victoria
- Nami Nelson - Senior Project Officer, Improvement Coach, Safer Care Victoria
- Kris Pierce - Co-Chair CAC RCH and Consumer Lead, Kids to Adults Alliance (UNSW), Royal Children's Hospital and Kids to Adults Alliance (UNSW)
- Tracy Stanley - Support Manager, Victoria/Tasmania Division at HeartKids Limited
- Barry Baulch, Mercy Hospital Werribee CAG Chair
- Jo Szczepanska, Principal Project Officer, Safer Care Victoria
- Dan Ussher, Consumer leader
Case study: Barry Baulch shares his experience of partnering with a delirium project
I have been part of a delirium project where I was brought in at the beginning. Everybody had a part. My part was to make sure that information was simple and easy to understand.
One of the first items was an information leaflet regarding delirium. And the first thing I said was ‘Are you really going to hand an information document to someone who has delirium?’
The group didn’t understand that there was something wrong with that. I pointed this out. They have delirium, and they won’t be able to take the information on!
I said we needed to have a round table discussion about what the issue is with this group to understand what needs to be in the information sheet that addresses the issues at hand.
This is what we do as consumers; simple things that we might comment on that needs to be changed, and this is both changing the way we provide a document and determining the content.
Now a whole heap of people who weren’t getting that information know more about the condition, all because everyone who was affected by the issue, sat down to talk about how we could make it better.