Session 2.1: Successful Engagement with People with Lived Experience
Introduction
People with lived experience (PWLE) are regarded as "experts by experience" in the scope of their first-hand experience.1 PWLE have lived (or are currently living) with issues the community is focusing on and who can offer insight about the system as it is experienced by others. They have:
Knowledge that does not come from training or formal education.
Deep understanding from their own experience in the community.
Expertise with a system, process or issue.
Understanding of what works to address the issue based on their personal insight, what does not work, and what resources (formal or informal) are available.2
Organizations that incorporate community members with lived experience are better equipped to make their services more focused, efficient, integrated, culturally appropriate, and sustainable.3
MCHwork provides a jump start to engaging PWLE through a Ready-Set-Go approach. Use the following resources to start your learning, dig deeper, and move from knowledge to practice.
READY: Start with Videos and Tool from the National MCH Workforce Development Center
Watch these three videos from the National MCH Workforce Development Center to gain an understanding of the strategies to engage PWLE in all aspects of your work in planning, designing, implementing, and evaluating programs that affect Title V populations.
For our users who are accessing these videos via assistive technology, we work to ensure a positive learning experience and access to content in our videos in an accessible format. You can access the full written transcript below each video and others on the website. If you need further assistance, we have developed this learning site to be compliant with Section 508 of the Americans with Disabilities Act and include a link at the bottom of each page to our accessibility page for further assistance.
In this video, we share what we mean by "lived experience," including ways to share a common understanding about the type and amount of engagement you hope to achieve and an examination of your organizational readiness to listen and share power.
In the second video of the series, we dive deeper into the topic by identifying who we mean by "individuals with lived experience," reminding everyone to consider current and historical culture of the community, and challenging MCH professionals to discover diversity by understanding intersectionality.
In the final video in the series, we bring it all together by "presenting your ask" once everyone is on the same page in understanding the issues, suggesting ways to consider the relationship with individuals who have lived experience, and exploring how and when to engage these groups.
Tool: Successful Engagement with People who have Lived Experience. National MCH Workforce Development Center. The purpose of this workbook is to provide detailed steps for professionals who seek to authentically engage with people who have lived experience to improve policy, services, supports, systems of care, health outcomes, etc. This document provides guidance for setting the stage in order to create trusting relationships and engage individuals with lived experience at the beginning of your work. Also available in Spanish.
SET: Learn More with Additional Resources from the MCH Navigator
Resources from the MCH Navigator. Use these resources to dig deeper into the specifics of engaging PWLE:
Start here with this video:Methods and Strategies for Engaging People with Lived Experience. Administration of Children and Families; Child Welfare Capacity Building Collaborative. In this video, presenters discuss the idea that by seeking the contributions of people with lived experience, child welfare professionals can improve their programs and services, especially for groups that have historically been marginalized and who disproportionately experience social and economic barriers. Advantages for agencies include developing a deeper understanding of the conditions affecting certain populations, the solutions that are most appropriate for those impacted by the issue, and the potential consequences of current and past actions taken by the existing system on the people it aims to serve.
Authentic Engagement with People of Lived/Living Experience. Tamarack Institute. This webinar discussed lessons from engagement with Indigenous community members with lived and living experience of poverty. It presents strategies to creating a safe spaces in their work such as questioning practices and methodologies, being kind and patient teachers, looking at the work from a different perspective, acknowledging that the space belongs to everyone, and stressing the importance of ceremony in engaging Indigenous peoples.
A Conversation on Engaging People with Lived Experience with Human Services Programs. National Association for Welfare Research and Statistics (NAWRS). The speakers of this NAWRS session included people who have engaged with state and federal agencies and research organizations as well as representatives from those agencies and organizations who prioritize the voices of individuals and families with lived experience.
Engaging Lived Experience in the Policy Making Process. Alliance for Children's Rights. This webinar focused on summarizing recommendations on how to engage those with lived experience in the policy making process. Panelists shared their recommendations on how policymakers and advocates can authentically engage people with lived experience in the decision-making process. Participants will understand recommendations made by subject matter experts and how advocates support people with lived experience in the decision-making and advocacy process.
Engaging People with Lived Expertise. U.S. Department of Housing and Urban Development. This webinar discusses specific methods to engage PWLE in HUD programs that can be translated across setting.
Engaging People with Lived Experience: Best Practices: Session 2. CHERISH Research. The "Engaging People with Lived Experience Project," is chaired by Ahmed Bayoumi, a professor in the Institute of Health Policy, Management and Evaluation at the University of Toronto. This session focuses on overdose and transmission of HCV and HIV, but the concepts of PWLE remains the same.
How States Can Effectively Engage People with Lived Experience. Pathways to Resilience. This webinar explores how to meaningfully engage trauma survivors and develop policies that support them at the state and local levels. Participants learned about concrete and actionable strategies to effectively involve people with lived experience in policymaking and program implementation.
Lived Experience: What It Is and How to Include It. Suicide Prevention Resource Center. This brief video starts by providing a brief explanation of “lived experience” and then describes the benefits of involving PWLE to guide service design and delivery. It asks the learner to consider the benefits for your situation, and identify the next steps you can take to incorporate lived experience.
GO: Make Your Knowledge Actionable with Tools from the MCH Digital Library
Resources from the MCH Digital Library. Use these resources to understand how to implement what you've learned:
Start here with this collection of resources: Engaging People with Lived Experience. Institute for Healthcare Improvement. This collection of resources provides information and tools to support communities and organizations to authentically engage PWLE in codesign and implementation efforts. It includes a toolkit, a report of engaging community residents with lived experience, resources on relationship building, assessment tool and resource guide for engaging PWLE of inequities.
Engaging People with Lived Experience: A Toolkit for Organizations. Suicide Prevention Resource Center. This toolkit has been developed to assist organizations and agencies leading programs in their communities with recruiting and engaging individuals with lived experience.
Engaging People with Lived Experience Toolkit. Community Commons. This toolkit was built by SCALE communities, faculty, coaches, and the 100MLives evaluation and implementation teams.
Engaging People with Lived Experience to Improve Federal Research, Policy, and Practice. Office of the Assistant Secretary for Planning and Evaluation. This webpage links to materials ASPE has prepared as it leads work on how federal agencies and programs can meaningfully and effectively engage PWLE. It asks the following questions: (1) Where are you on your overall journey? (2) What do you know about PWLE of your topic/issue and ways to effectively integrate them into your work? (3) What value do you see or hope for in engaging PWLE as members of the core team and in broader engagement? (4) What roles will you ask PWLE to take? and (5) How can you avoid 'us' and 'them' ways of thinking? How can you construct a shared narrative? What does everyone care most about?
Lived Experience Engagement Checklist. This resource has been designed to support staff working in the public mental health sector to maximise engagement and collaboration with people with lived experience (for project /policy work, consultation, collaboration on pieces of work). The checklist looks to create the greatest possible opportunity to have lived experience expertise influence, design and drive the work within the public mental health sector.
References
1 Vojtila, L., Ashfaq, I., Ampofo, A. et al. Engaging a person with lived experience of mental illness in a collaborative care model feasibility study. Res Involv Engagem 7, 5 (2021). https://doi.org/10.1186/s40900-020-00247-w
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.
