People with Lived Experience

People with lived experience continue to have opportunities to share their expertise, make a difference, and are provided with new experiences to hone their skills.

Current Participants:

• Publicly recognize their involvement.
• Express gratitude, it goes a long way.
• Acknowledge people’s participation in the final product.
• Ask and support people with lived experience to share the product (at conferences, posters, etc.).

Future Opportunities:

• Broaden the base of people with lived experience by repeatedly identifying new community members to be involved in projects or programs. Consider pairing newly involved individuals with more seasoned people with lived experience as mentors.
• Provide technical assistance and institutionalize support mechanisms for people with lived experience to be engaged and supported as leaders.
• Promote policies and practices to support engagement and leadership within organizations.
• Be honest about the future of the project. Sometimes grants simply end and there are not future opportunities in the same way or with the same group.

Linking to the MCH Leadership Competencies. Sustaining engagement of 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.

• 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.
• 8S7: Use feedback from people with lived experience, and community members, obtained through focus groups, surveys, community advisory boards, and other mechanisms as part of the project's continuous quality improvement efforts. Monitor and assess the program overall for effectiveness of partnerships between professionals and people with lived experience.
• 8S8: Ensure that perspectives from people with lived experience are actively informing the development, implementation, and critical evaluation of MCH research, clinical practice, programs, and policies.

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.

• Building and Supporting Partnerships and Community Engagement (WISH Module 5). Year Developed: 2012. Source: North Carolina Institute for Public Health. Presenter(s): n.a.. Type: Online Course. Level: Intermediate. Length: 45 minutes.
• Community Engagement in Public Health Interventions for Disadvantaged Groups: What's the Evidence?. Year Developed: 2016. Source: Health Evidence. Presenter(s): Alison O'Mara-Eves. Type: Webinar. Level: Intermediate. Length: 72 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.
• Collaboration and the Early Years: Exploring the Benefits and Challenges of Integrated Working. Year Developed: 2022. Source: Anna Freud National Center for Children and Families. Presenter(s): Marvyn Harrison, Claudia Coussins, Sanjana Jio, and Abigail Wright. Type: Panel Discussion. Level: Introductory. Length: 90 minutes.
• Health Equity in Action Summit – Collaborating to Improve Maternal and Child Health Outcomes. Year Developed: 2022. Source: Pfizer. Presenter(s): Jamila Taylor, Angela Aina, Brisa Urquieta de Hernandez, and Jamila Perritt. Type: Conference Panel Discussion. Level: Introductory. Length: 55 minutes.
• Leveraging Feedback in Community Engagement. Year Developed: 2019. Source: Switchboard TA. Presenter(s): Brianne Casey, and Rebecca Mulqueen. Type: Webinar. Level: Introductory. Length: 60 minutes.
• Intro to Continuous Quality Improvement. Year Developed: 2020. Source: Community Action Partnership. Presenter(s): Barbara Mooney, and Courtney Kohler. Type: Webinar. Level: Introductory. Length: 30 minutes.