Methods and Emerging Strategies to Engage People with Lived Experience

Syreeta Skelton-Wilson
Madison Sandoval-Lunn
Xiaodong Zhang, Francesca Stern
Jessica Kendall
Implementation Tool
January 2022
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Toolkit offers lessons for engaging people with lived experience in human services initiatives.


People with lived experience, who have been impacted by social issues, can provide valuable information to human service initiatives to improve services. Engaging historically marginalized populations, in particular, can advance equity in these initiatives. This tool summarizes lessons from 11 federal initiatives that engaged youth, young adults, and adults to improve research, policy, and practice. The initiatives highlighted in the tool serve people with disabilities, family caregivers, people with mental health needs, and people with health-related social needs, including criminal legal system involvement.

About This Tool

This toolkit starts by detailing why it is important to engage people with lived experience. It then lays out important characteristics for how to operationalize this type of engagement, such as the spectrum of  roles that people with lived experience have commonly played in these initiatives, the range of activities that people with lived experience commonly execute in these initiatives, descriptions of emerging strategies that have resulted in more meaningful engagement, and analysis of facilitators that contribute to successful engagement. The tool concludes with four lessons extrapolated from these initiatives: (1) provide appropriate infrastructure and resources; (2) prioritize equity and access; (3) use thoughtful engagement practices; and (4) enact policies and protocols.

The tool is a part of a series that also explores the following topics:


Health policymakers, health care providers, health plans, and researchers can use this toolkit to learn practical strategies for involving people with lived experience in meaningful engagement that can improve delivery of health care services and advance equity.

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