Involving People with Lived Experience

Individuals with lived experience have unique knowledge, insights, and perspectives that are valuable for an organization’s growth and ongoing improvement. Engaging individuals with lived experience opens new opportunities for reduction in prejudice and discrimination, improvements in policies and procedures, expanded services, decreased loss of work costs, increased revenue, and improved employee loyalty and morale. It can also lead to improvements in the knowledge and attitudes of other staff within the organization, such as sensitivity to community issues, and attention to cultural factors. Consequently, in many organizations, particularly health and behavioral health services, purposefully including individuals who have lived experience in planning, policy review, and decision-making is a growing trend. 

Adding lived experience perspectives may initially make some staff uncomfortable.  However, many organizations have found that through additional training and support, this discomfort can be resolved. And ultimately, having lived experience perspectives leads to positive change in the overall organizational culture.

When involving people with lived experience it is important to treat them equitably in relation to other team members, allowing for the same level of input, decision-making, and access to organizational resources. Employees with lived experience may need reassurance that their status will have no impact on their job or performance evaluation.

People with lived experience may also need some resources and supports to help with sharing their experience (if they choose to do so). The Tools section of this guide lists three resources on determining one’s readiness to share personal experience and how best to do it. For people with lived experience who may need emotional support, lists of crisis lines and resources for attempt survivors and loss survivors are also in the Tools section.