5. Co-Design - Engaging People with Lived Experience

This toolkit was developed by the People with Lived Experience Workgroup and Community Champions from 100 Million Healthier Lives, and is brought to you in partnership with 100 Million Healthier Lives and the Institute for Healthcare Improvement.


By this stage, you’ve integrated persons with lived experience into your team, and are ready to co-design with them and/or with the larger community. Co-design is defined as the shared mapping of a problem, identifying shared priorities, and designing, implementing and evaluating a potential solution together with those most affected by the issue. The concept of co-design is based on an understanding that we have limited knowledge, and by bringing together both those who are trying to respond to an issue and those who are most affected by it, we can pool everyone’s knowledge and experience to define a problem, design, test and implement an impactful solution.

There are three levels of co-design:

To choose your approach, it helps to assess your readiness for the different levels of co-design. Once you know what you are ready for, ask yourself these questions: whose voice isn’t heard? Who do you need at the table? What knowledge, experience, resources do they bring? 


Regardless of the level, the standard process we recommend is roughly the same:

  1. Assess your experience, readiness, and choose your approach for engaging with people with lived experience.
  2. Map experiences, resources, barriers and needs with a modified journey, or experience map.
  3. Agree on shared priorities.
  4. Design a potential solution.
  5. Plan a test of change and measures for success.
  6. Test your idea; measure. Look for metrics that look at any process from the perspective of the people carrying it out and the community resident experiencing it.  For example: use a Plan-Do-Study-Act cycle to test your idea, using a family of measures (process and outcome measures). Look to see if a solution worked for both the people coming to a food bank, and the people working at the facility.  
  7. Assess the outcome, decide on next steps. For example: should you abandon, adapt or adopt the solution?

Additional Considerations

Level 1: Integrating persons with lived experience into the team

  • As a team, work through the steps above. Make sure the team member with lived experience is engaged in all stages of the work. 

Level 2: Integrating persons with lived experience into the team AND connecting them to a group of peers for feedback

  • Before you begin, make sure the team member with lived experience has a strong connection to peers with lived experience. If they don't have a connection, use existing relationships (the team's, the community resident's) to connect them to a group. Check that they are able to effectively get feedback from their peers.
  • Before mapping, ask: what don’t we know? Whose voice isn’t heard? Connect to those people, and do the map together.  

Level 3: Integrating persons with lived experience into the team AND co-designing with the community

  • Before you begin, gather those trying to address the issue (e.g.  leaders and staff of agencies, non-profits, support services) and those affected by it/with lived experience. 
  • Decide how you will work together - will you have an action team, made up of community members with lived experience, community leaders, and those working to address the issue? 

All levels

  • Support the community residents with lived experience in their work as a bridge to other community residents and leaders. Ask them what tools, strategies or supports would most be helpful. Explain the value of writing down exactly what people say—or asking people to write their own thoughts, if they can.
  • When a community member with lived experience shares their story in a room, they are choosing to be vulnerable, and model open sharing for others. However, a team member with lived experience has much more to offer than their experiences - they are another pair of eyes, a problem-solving mind, and more. Remember that, and remind them as necessary.
  • Keep communication at the forefront of your work: share what you are working on and what you are learning to community members, organizations and other stakeholders early and often. Invite input and grow their understanding of your work to better improve its utilization. And talk to the team members with lived experience, and discuss how to communicate the team’s work. Things to cover: key reasons that this work is being done? Why is it being done this way


Screen grab of How to Improve resource
How to Improve
Brought to you by IHI
Collage of portraits from 100 Million Healthier Lives movement
Stories from 100 Million Healthier Lives
Brought to you by 100MHL
Published on 09/10/2020

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