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1. Getting Started - 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.

Getting Started

Defining Lived Experience

A person with lived experience is someone who has lived (or is currently living) with the issues the community is focusing on and who may have insight to offer about the system as it is experienced by consumers (e.g., a woman who was formerly or is currently experiencing homelessness who can offer insight into that experience). They will have: 

  • Expertise that doesn’t come from training or formal education.
  • Knowledge from an experience with an issue or challenge.
  • Direct experience with a system, process or issue, or trying to engage with a resource.
  • Awareness of what works, what doesn’t work, and what resources (formal or informal) are available in the community.


When bringing people with different experiences, needs and perspectives together, prepare what you can, and ask open, honest questions to learn along the way.  Questions are the antidote to the assumptions that drive--or limit--expectations for what is possible, and are key to including everyone in co-design. Below are three questions essential to collaboration:

  1. Who is most affected by this issue? Whose life will most be impacted by our work? That’s who you need to engage! To make real, effective change, we need to change the way that we do things. That means moving beyond surveys and consultation, to bringing people with lived experience into the room, and working together. 
  2. Which voice is not heard? Who do we need at the table? Asking this question keeps us from assuming that we know everything we need to know, and instead gives us a chance to learn about resources in the community, or potential partners in the work. It also avoids the trap of assuming that one or two people’s experience represents everyone’s experience with an issue.
  3. What do people have, need, or are ready to grow into? By asking this question, you invite people to describe themselves, their skills and capacity for the work. Over time, you can invite them to grow their capacity, while checking in to make sure the work continues to align with their interests and resources. By asking about what people bring and how they’re ready to grow, you can avoid tokenism and instead approach each other as whole, complex, changing beings. 

Engaging PWLE in community transformation is a challenging, joyful and deeply rewarding opportunity to change how we work, as well as our outcomes. It can feel intimidating, but so is anything that's really worthwhile. Don't aim for perfection; just start somewhere. Start wherever you are, whether you are just beginning or are already collaborating deeply with the community and residents with lived experience. Celebrate unexpected learning and failures along the way and embrace the challenge as an unparalleled opportunity to bring about needed change. Understand that whatever priorities brought you to the work matters as well as what matters to the PWLE and their community. Look for the sweet spot!

As you prepare, think about the following

  • Where are you on your overall journey? Assess your (and your organization’s) experience & readiness with the topic/issue you are addressing.
  • What do you know about PWLE of your topic/issue and ways to effectively integrate them into your work?
  • What value do you see or hope for in engaging PWLE as members of the core team and in broader engagement?
  • What roles will you ask PWLE to take?            
  • How can you avoid 'us' and 'them' ways of thinking? How can you construct a shared narrative? What does everyone care most about?

Resources

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Stories from 100 Million Healthier Lives
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Brought to you by 100MHL
Published on 09/10/2020

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