CAPHRA: Health policy fails when lived experience is ignored

MANILA, Philippines - Rezul -- The Coalition of Asia Pacific Tobacco Harm Reduction Advocates (CAPHRA) says governments are still making avoidable health policy mistakes because they treat lived experience as optional.

In a new paper, The Value of Lived Experience in Health Policy Development, CAPHRA argues that people living with the real-world consequences of policy provide practical insight that can reduce delivery risk, strengthen trust, and prevent costly failure.

CAPHRA says lived experience should be treated as implementation intelligence, not token consultation. The paper argues that evidence tells policymakers what is happening and what tends to work, but lived experience helps explain why policies succeed, fail, or create friction when they meet daily reality.

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Nancy Loucas, Executive Coordinator of CAPHRA, said too many health policies are still being designed to look strong on paper rather than work well in real life.

"Lived experience is not a substitute for evidence," Loucas said. "It is implementation intelligence that helps governments see how policy will actually work under real-world conditions. If policymakers ignore that, they increase the risk of failure before a policy even begins."

The paper says lived experience can help policymakers define the real problem earlier, identify barriers to access, improve service design, strengthen communication, and detect unintended consequences before they become public controversies or expensive redesign projects.

CAPHRA argues that many policy failures begin when governments assume people will respond as intended, without understanding how communities actually navigate risk, stigma, cost, trust, and daily constraint.

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Clarisse Virgino of CAPHRA Philippines said meaningful involvement must happen early enough to shape decisions, not after the direction has already been set.

"People with lived experience often see the barriers institutions miss," Virgino said. "If governments want policy that works in real life, they must involve those voices early, not as an afterthought, and show what changed because they were heard."

CAPHRA is calling on governments and health agencies to build lived experience into the full policy cycle - from design to implementation to evaluation. The group says meaningful involvement should include diverse representation, payment for contributions, clear scope, feedback loops, privacy protections, and a focus on system insight rather than symbolic storytelling.

"When lived experience is included meaningfully, policy becomes more grounded, more implementable, and more resilient," Loucas said. "That does not weaken authority. It strengthens it."