Incorporating Lived Experience

Throughout the process of developing Health in Mind, the CHIP team made it a priority to incorporate the perspectives of individuals with lived experience to ensure that our recommendations were informed and supported by those who would most directly benefit from more effective philanthropic funding. We engaged these voices via focus groups in a clubhouse setting, a peer education and training center, and at the National Alliance on Mental Illness (NAMI)’s 2019 conference. These individuals shared their diverse experiences with mental health disorders and addiction including topics such as navigating the mental health care system, accessing treatment and social supports, and stigma. In addition to informing our framework, these perspectives are included throughout the narrative as they relate to each funder strategy.

Including these voices was a core component of our work for several reasons: Those who have lived experience provide a great deal of insight into what it’s like to interact with health systems and access care. They’re also able to point toward what works and what doesn’t from the perspective of the care recipient. Those with lived experience can guide the language we use, highlighting what terminology is appropriate and what could be considered hurtful. It’s paramount to include the voices of those who are the beneficiaries of care and supportive services to ensure their needs are being met, and to ensure what’s being offered or introduced is wanted. It embodies the notion of “nothing about us without us.”