This approach includes the following key tools:
- Questions to ask before starting a co-design project
- Organisational readiness assessment
- NSW Health Agency for Clinical Innovation’s Co-design toolkit
- Australian Healthcare and Hospitals Association’s Co-design toolkits and resources
- Reflection questions for after a project is complete
What is co-design?
Co-design is a process and approach that involves all stakeholders working as equals in leadership, design, delivery, and decision-making. Essentially, it is the creation of solutions by and for people impacted by those decisions. This is especially important in rare disease where there is much unmet need and limited evidence-based solutions. Co-design is different from consultation, because co-designers have an active role in contributing to the process on an ongoing basis.
It is important to note:
- Differences of opinion will occur – these differences should be seen as learning opportunities and points of collaboration, not a barrier to progress.
- There should be opportunities for people living with a rare disease to take on active roles in line with their capacity and willingness to do so.
There are several phases of co-design, as described in Table 2.
Table 2. Co-design phases
Design phase
- Identify the issue or common goal
- Understand the gaps and opportunities
- Be aware of where different expertise lies
- Establish a relationship with the community
Delivery phase
- Convene your co-designers
- Be patient and open to the back-and-forth (iterative) nature of co-design
- Gather expertise, especially lived experience, via interviews, written communication, surveys or other methods preferred by the community
- Do not expect everyone to agree
Evaluation phase
- Sense-check that the desired outcome was achieved
- Determine if the outcome is appropriate and aligns with the needs of the community
- Evaluate and review the methodology for appropriateness
Getting ready to co-design
Co-design requires careful thought and planning. The tools below may be helpful before starting a co-design project.
Questions to ask before starting a co-design project
- How will I go about ensuring the rare disease community is involved in my work from the very beginning, including identifying needs and goals?
- How will I go about seeking expertise and input from the rare disease community? What questions will I ask?
- Who will I engage with from the rare disease community? How do I plan to engage with them?
- What steps do I need to take to achieve the goal or vision in partnership with the rare disease community?
- Is our process iterative and does it bring along the rare disease community with every iteration?
- How can I establish a safe space for storytelling? What measures do I need to take and what are the key considerations?
- What are the risks for my storytellers in sharing their lived experience? How will I support storytellers sharing their lived experience and set up mechanisms for follow-up?
- Which other key stakeholders from the sector do I need to align with?
- How can we frame and strengthen our message as a collective, and ensure the rare disease community are part of crafting that message?
Co-design may be more challenging and complex for larger organisations, especially those that have policies and procedures that do not historically include consultation and co-design.
Completing the checklist below before starting a project may help organisations assess whether they are ready for co-design, and if not, where there are opportunities to strengthen the co-design. This checklist was adapted for the rare disease sector from the NSW Health Agency for Clinical Innovation’s Organisational co-design readiness assessment.35
The challenge of co-design
We find true co-design very difficult to achieve. We do involve the mito community [those with lived experience of mitochondrial disease] at all stages of our work and we’re getting better at working in partnership.”
Mito Foundation
Co-design tools
Many tools have been developed to help guide co-design. Most are not specific to rare disease and may need adapting to consider the unique challenges faced by the rare disease community.
NSW Health Agency for Clinical Innovation’s Co-design toolkit provides guidance and resources to help health services adopt a co-design approach, including suggestions for working together in co-design.
The Australian Healthcare and Hospitals Association’s Experience Based Co-design Toolkits helps bring the Australian health sector together in authentic and equal partnership for co-design.
After a co-design project is complete
The questions below may be helpful when a co-design project is complete.
Reflection questions for after a project is complete
- Did I successfully involve people living with a rare disease in my work? How could I do this better in the future?
- Did I effectively embed the lived experience of people living with a rare disease in my work? How do I know this? Did I evaluate my work?
- Did I support people living with a rare disease and did I provide a safe place for sharing their lived experience?
- What did I learn from this process that I did not know before?
- Did anything work exceptionally well that I would do again? Are there certain things that I would do differently and why?
Further reading
The resources below offer practical tools, templates, and guides for successful co-design with the community.
- A Guide to Build Co-design Capability (Agency for Clinical Innovation). This resource helps to build capacity of health services to co-design with people with lived experience of a health condition.
- Ways of Working Together in Co-design (Agency for Clinical Innovation). An interactive toolkit that provides details about co-designing with others in the health sector.
- Collaboration toolkits and resources (Australian Healthcare and Hospitals Association). A series of toolkits and other practical resources focused on co-design and collaboration.
- Spectrum of Public Participation (International Association of Public Participation). A visual tool to help organisations understand the degree of community or individual participation.
- Consumer participation strategies (Centre for Culture, Ethnicity and Health). A visual tool that depicts the many ways a community or individual can participate. It is a culturally and linguistically diverse-specific tool.
- Co-production guidelines (UNSW Disability Innovation Institute). Recordings of webinars and helpful guidelines in accessible and user-friendly formats.
- Co-design with Aboriginal and Torres Strait Islander peoples and communities (Metro North Health Queensland Government). Tips and helpful resources for co-designing with Aboriginal and Torres Strait Islander peoples.
- Consumer and Community Involvement Program e-Course (CCI Program). A shared community of people with lived experience, universities, health and medical research institutes, health services, and non-Government organisations.
