Synopsis
EPIC is a practical framework for ethical collaboration with Experts by Experience (EBEs): people whose direct experience with systems such as mental health, substance use, education, violence prevention, housing, poverty, child welfare, re-entry, or other forms of institutional contact gives them actionable knowledge about how those systems work and fail. The framework is designed to move lived experience from testimony at the edge of an organization into compensated, structurally embedded participation in design, strategy, evaluation, and decision-making.
The problem it responds to
Organizations frequently invite people with lived experience into panels, listening sessions, advisory groups, or storytelling roles while retaining the real agenda-setting and decision authority elsewhere. That creates participation without power and turns personal experience into an extractive input rather than a form of expertise.
What the work contributes
- Defines a four-stage progression: Engage, Partner, Integrate, and Co-Create.
- Separates Experts by Experience from narrower peer-support roles by focusing on macro-level system design, policy, program, culture, and structure.
- Builds consent, transparency, practical support, and equitable compensation into the entry point rather than treating them as afterthoughts.
- Moves EBE involvement into standing organizational structures such as planning, evaluation, hiring, leadership, and strategic accountability.
- Treats co-created products, policies, research, and programs as shared work that should carry appropriate authorship, credit, contracts, and—when relevant—ongoing compensation.
The four stages
- Engage — make the invitation specific, transparent, consent-first, and honest about time, compensation, practical support, and actual decision power.
- Partner — define equitable roles, compensate EBEs as experts, cover real participation costs, and give them authority capable of changing the outcome.
- Integrate — make EBE participation part of the organization’s normal machinery rather than a special event: planning, implementation, evaluation, hiring, leadership, and strategy.
- Co-Create — bring EBEs in at the idea stage, flatten decision structures where appropriate, share authorship and ownership, and leave durable structures behind after any one participant exits.
Structural commitments
- Multiple ways to participate and genuine room to decline or step back without penalty.
- Compensation comparable to other consultants or contributors, plus travel, childcare, lost-wage, access, and other practical supports when needed.
- Clear statements about how input will be used and how much authority participants actually hold.
- Ongoing organizational accountability for demonstrating how EBE contributions affected decisions rather than merely recording that consultation occurred.
Development
- Developed as a practical framework and training model in 2025.
- Designed for use across sectors rather than as a caregiver-specific program.
- Connects directly to survivor-led governance, participatory program design, and IncuBrighter’s broader civic-capacity work.
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