Consumers, carers and NSW Health staff made all of us. Here we explain what NSW Health did to develop All of Us.
First, we asked a few people to help us. Our helpers included an Advisory Group (made up of consumers, carers and NSW Health staff), two knowledgeable independent facilitators (KA McKercher and Sue Muller) and visual designer Lucy Klippan.
Next, we talked with the Advisory Group about:
*A Design Crew [1] is a group of people who design something together (in this project, a guide). A Design Crew is usually more hands-on than an Advisory Group and includes creative provocateurs, consumers, carers and staff.
With the advisory group, we set two goals:
We also decided what we wouldn't focus on. That included (and still does):
Then, we reviewed 35+ frameworks, tools and guides from NSW and Australia. From other sectors and countries. The questions for the review were:
While reviewing the documents, we asked the advisory group for nominations to help us recruit the Design Crew**. Then Sue and KA:
**The Design Crew had consumers, carers and staff from across cities, rural and regional NSW. The group included Aboriginal people, young people, trans people, culturally diverse folks, people with disability, and provocateurs from Victoria and Queensland. People joined us from hospital beds, tractors and the top of Perisher.
Meet some of the Design Crew[3].
Frameworks are built on principles and promises. So, we summarised the principles we found in the material review for the Design Crew. They built on it by identifying gaps, combining things and saying simpler words to use. They created a first draft of the guiding principles (what became the 'Six ways of working ' in All of Us).
After the first session, the Design Crew kept thinking about the principles and gave us more feedback. In session two, we explore what helps and hinders good engagement and what methods people would like more of (beyond committees). We used all of that insight to prepare for testing and start thinking about tools to go with the Guide.
It's important to balance a depth of feedback with a breadth of feedback. So, we did four virtual testing sessions involving more than 168 consumers, carers and staff from across NSW (and from across local health districts and agencies). You can see the invitation[4].
The goal of the sessions was to know:
It's hard to please 168 people. Overall the feedback was positive. Some people wanted to be more involved, spend more time in breakout rooms and move faster. We don't apologise for slowing down and taking time to establish safety, explaining what we were doing and how the technology worked to widen inclusion.
"This was one of the best-facilitated sessions that I have attended in the health space. I knew exactly what was expected of me and felt confident the space we were engaging was very safe, respectful and welcoming."
"The communications before, during and after have been exceptional and impressive. The participants were collective in cause yet diverse in perspective. An empowering process."
"Great that the opportunity to provide feedback outside the session was offered." "Overall a very welcoming session where I also felt I learnt things along the way."
After the testing sessions, we took what we heard in the sessions and a post-event survey (available to all participants) and worked with the Design Crew and Advisory Group to decide how to move forward. We shared a summary of what we heard with the big group who came along to the testing sessions.[5].
Testing participants told us they really wanted videos to help explain the Six ways of working. So, we gave participants multiple opportunities to register and be in a video. When it came time to make the videos we got back in touch.
We heard that 'framework' and 'principles' was too corporate. So, we looked for a metaphor. We thought of core ingredients and recipes. The Design Crew and Advisory Group told us the ingredient/recipe metaphor made the principles for good engagement easier to understand and talk about. And helped them think about using the ingredients in situations and communities.
A recipe card for one of the Design Crew thinking about a recipe for engaging consumers living with a disability. Ali shares: "Try not to assume - always ask instead."
We wanted to develop a few tools and videos that could help facilitators and hosts put the Six ways of working into action. We looked at current tools, talked with the Design Crew, Advisory Crew and engagement leaders across the system. We made first drafts. And, we took hours of video footage with consumers, carers and staff.
As the Design Crew worked online, we printed the materials and sent out an activity pack. The Design Crew came to workshop three with their individual packs and experimented with making recipes for great engagement.
Hearing we were on the right track, we worked with visual designer Lucy Klippan to create a friendly and inclusive visual design for the Guide. The Design Crew and Advisory Group named the Guide All of Us.
We launched the Six ways of working (called core ingredients) and video of the Design Crew[3] in late 2022. We knew that everyone (staff included) was probably to tired to engage with a new thing. So, we kept working on All of Us to launch in 2023.
Why so far away? Co-developing things takes time. As does building accessible content, tools, videos and a website.
Rather than a single document, we heard that All of Us should be a website that is kept up to date. We did individual feedback sessions with NSW Health staff, consumers and carers to look at early drafts (called wireframes) to make sure the website language and navigation made sense. We made loads of changes and created a new version.
Meanwhile, we improved the tools through several rounds of feedback from staff, engagement leaders, consumers and carers.
We formed a pre-launch crew with some Design Crew and Advisory Group members to keep their voices in the final parts of development. The crew met twice and reviewed the All of Us Overview and Six Ways of Working website content. We took their feedback seriously. One of the crew members, a consumer said:
"I really like the important focus given to the responsibility of facilitators to create and maintain safe spaces. I really like that there's actual usable ideas in there. I like the accurate and inclusive way wheelchair users have been visually represented throughout."
We officially launched All of Us during Human Experience Week. We ran workshops and sessions to explain what it is, explore the value it could add and what it could look like in action in local projects.
If you've got ideas or would like to host something, please contact MOH-PatientExperience@health.nsw.gov.au
