People with Lived Experience

The best time to engage is the moment you realize you need others to impact a decision and never after the decision has been made.

Inviting people with lived experience from the beginning of an activity or project is best practice. If you don't invite the people served at the beginning, it deprives them of the relationship building that may have gone on among the other program people who are working together. If invited later, people with lived experience will need the back-story about the project when they join the discussion. If you invite people too early, they may wonder why they are there and feel as though their time is being wasted or, worse yet, as though the invitation was merely so the program could check a box. If you wait too long, then people may feel like their ideas do not really matter. Programs must be intentional and thoughtful when engaging with the community.

• Project Design
• Planning
• Executing
• Monitoring
• Evaluation
• Dissemination

Linking to the MCH Leadership Competencies. Understanding when the best time to engage PWLE is a key component of the skills section of the MCH Leadership Competencies. Click the links below to access trainings that support the related sub-competencies.

• 8S1: Solicit and implement input from people with lived experience in the design and delivery of clinical or public health services, program planning, materials development, program activities, and evaluation. Also, compensate participants as appropriate for such services.
• 8S2: Provide training, mentoring, and other opportunities to people with lived experience, and community members, to lead advisory committees or task forces. Furthermore, seek training and guidance from these groups to inform program and care development.
• 8S3: Demonstrate shared decision-making among individuals, families, and professionals using a strengths-based approach to strengthen practices, programs, or policies that affect MCH populations.

Implementation. Remember, the key to effective partnerships with PWLE:

• Shared decision making, involving self-advocates and/or the family, in planning and implementing activities.
• Addressing the priorities of people with lived experience using a strengths-based approach.
• Recognizing the agency of self-advocates in decision-making as they approach transition age, and across the lifespan.
• Connecting people with lived experience to needed services.
• Acknowledging that the effects of the SDOH, and broader systems of care, greatly impact individuals with special health care needs and developmental disabilities.

• Five Good Ideas about making lived experience part of your non-profit’s DNA. Year Developed: 2019. Source: Maytree Foundation. Presenter(s): Victor Willis, Ann Lapenna, and Terence Williams Type: Webinar. Level: Introductory. Length: 45 minutes.
• Missing Voices: Listening to People with Lived Experience to Create a More Equitable and Effective Pandemic Response. Year Developed: 2021. Source: Evidence Exchange Network. Presenter(s): Christina Foisy, Jase Watford, Lisa Frys, and Sandi Bell. Type: Panel Discussion. Level: Introductory. Length: 57 minutes.
• Listen, Engage, and Reflect: How to Authentically and Respectfully Engage Individuals With Lived Experience in Storytelling Practices. Year Developed: 2022. Source: Child Welfare Capacity Building Collaborative. Presenter(s): Huyanna Clearwater, Jeremiah Donier, Alex Gaither, Michaela Guthrie, Marcella Middleton, Keri Richmond, and Dakota Roundtree-Swain. Type: Webinar. Level: Introductory. Length: 45 minutes.
• Shared Decision Making - Empowering Patients. Year Developed: 2019. Source: Aplastic Anemia and MDS International Foundation. Presenter(s): Susan Z. Berg. Type: Webinar. Level: Introductory. Length: 52 minutes.
• Patient-Provider Communication, Patient Empowerment, and Reducing Health Disparities. Year Developed: 2018. Source: Seattle Children's. Presenter: Monica Peek.  Type: Webinar. Level: Introductory. Length: 28 minutes.
• Creating Inclusive & Anti-Ableist Triage Policies. Year Developed: 2023. Source: Disability Rights New York. Presenter(s): Laura Guidry-Grimes, Katie Savin, and David Whalen. Type: Webinar. Level: Introductory. Length: 60 minutes.