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.
Building authentic relationships and creating an
environment of trust takes time. When the
process ends early, mistrust is created.
Support the Process:
Everyone will deepen the relationship and continue to work together for the long haul, fostering an atmosphere of trust.
Provide infrastructure, technical assistance, and support. Invest in developing leadership skills and building capacity for community members to effectively address their current and future challenges. For example, partner with a family-led or community based organization to provide training.
Develop a culture of appreciation; take time to make sure that everyone's work and efforts are appreciated. Be specific about what someone did that you are grateful.
Ensure communication is ongoing and everyone is getting the same message. Decide as a group how information is going to be shared (email, text, what's ap, etc.)
Evaluate the Process:
Have a safe person who will check in with participants following the meeting to see how the meeting went.
Use Plus/Delta (+/Δ ) at the end of meetingsto evaluate the meeting.
Follow through and “close the loop.”
Dedicate funding for evaluation and dissemination of findings to monitor whether initiatives are working as intended and promote community buy-in and
sustained investment in interventions.
Linking to the MCH Leadership Competencies. Understanding commitment as related to 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.
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.
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.
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.
