All humans have lived experiences that provide them with specific insights. In the context of public health, the engagement of “people with lived experience” aims to identify and amplify those voices, being inclusive of those heard less often.
Watch the video below to start your learning and then access the links to use the Ready-Set-Go approach to deepen your knowledge and skills.
It is important to connect people with
lived experience to opportunities for
which they are well suited.
Know people
well enough to
always connect
them to
opportunities in
areas where they
feel they can
have an impact.
Family:
Being a leader in one's own family – advocating for one's own child or situation.
Peer: Connect with and support others in one's community and beyond that have a shared experience.
Agency: Participate in decision-making related to policy, program development & evaluation, professional education, hiring processes & support/service delivery.
Systems: Contribute to improving the quality of supports and services that are essential for effective policies and practices at all levels of care and systems planning.
Linking to the MCH Leadership Competencies. Understanding the effective connections 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.
8S4: Assess and tailor recommendations to social, educational, and cultural issues affecting people with lived experience.
8S6: Collaborate with organizations that are led by people with lived experience to build and deepen involvement across all MCH programs.
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.
8S9 Assist health care professionals, organizations, and health plans to develop, implement, and evaluate models of family-professional partnerships and direct partnerships with self-advocates.
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.
Facilitating Connections in MCH. Year Developed: 2017. Source: U.S. Maternal and Child Health Bureau. Presenter(s): Raven Wright; Shelly Johnston. Type: Webinar. Level: Intermediate Advanced. Length: 35 minutes.
Achieving True Partnership: Integrating Family Engagement in Systems of Care. Year Developed: 2017. Source: National Center for Medical Home Implementation, National Center for Family Professional Partnerships, Bright Futures National Center. Presenter(s): Deborah Garneau MA, Cornelia Deagle PhD MSPH, Barbara Kahler MD FAAP, Dana Yarbrough. Type: n.a.. Level: Intermediate Advanced. Length: 56 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.
This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number UE8MC25742; MCH Navigator for $225,000/year. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.
