Approach 3: Co-design. How to apply co-design to ensure the needs and priorities of all rare disease stakeholders are included.

This approach includes the following key tools:

  1. Questions to ask before starting a co-design project
  2. Organisational readiness assessment
  3. NSW Health Agency for Clinical Innovation’s Co-design toolkit
  4. Australian Healthcare and Hospitals Association’s Co-design toolkits and resources
  5. Reflection questions for after a project is complete

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

  • Identify the issue or common goal
  • Understand the gaps and opportunities
  • Be aware of where different expertise lies
  • Establish a relationship with the community
  • 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
  • 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

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

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.

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?

The resources below offer practical tools, templates, and guides for successful co-design with the community.

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