88 I You Can't Care for a Community You Don't Listen To

Overview:

We explore the difference between superficial and real community engagement in healthcare with guests Rebecca and Stephanie, both experienced patient advocates who share their personal stories of navigating complex health systems and channeling their experiences into advocacy work. We discuss the importance of authentic partnership, meaningful compensation for lived experience, and the nine dimensions of effective engagement outlined by the Inspire project—trust-based, asset-based, inclusive, integrated, mutually beneficial, resourced and compensated, transformational, and restorative approaches. We highlight practical strategies for organizations to operationalize engagement, the power of trust as a currency, and the need for diverse and relentless voices to drive change. Concrete examples of patient-centered initiatives and the challenges of balancing systemic change with individual needs round out our conversation on making healthcare more responsive and equitable for all.

Three Takeaways:

1. Engagement Must Be Real, Not Performative

Rebecca Esparza specifically calls out that patient engagement needs to go “beyond tokenism”—it’s not just holding a party, sending a survey, or checking a box. Instead, authentic engagement involves patients as true partners in decision-making, not just as a gesture for appearance.

2. Compensation for Lived Experience is Crucial

Stephanie highlights that organizations often struggle to fairly compensate people for sharing their lived experience. She stresses that asking for “time, treasure and trauma” without compensation is unacceptable, as patients relive difficult moments for the benefit of the system

3) Mutual Benefit and Impact Must Be Evident

Stephanie refuses to participate in projects without tangible impact, emphasizing that engagement is only worthwhile if it leads to real change. She looks for clear evidence—such as organizations reporting back how patient feedback resulted in concrete action

References:INSPIRE Report: A Roadmap to Authentic Community Engagement — PFCCpartners

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