How should care organizations use lived experience?

What responsibility comes with someone sharing their experience?

When someone chooses to share their experience of mental illness, what responsibility do we have for what happens next?

Sharing something publicly that you spent years trying to understand and navigate privately can come at a cost. Once our stories are out in the world, we cannot control how others interpret them or whether they will be used against us.

I've shared parts of my own experience of PTSD, moral injury, and treatment. Those experiences have shaped how I understand care and the systems meant to provide it. They give me a perspective. They do not mean I speak for everyone, or that every conclusion I draw is right.

For me, that raises a question every healthcare organization should consider: when someone trusts us with their experience, what are we willing to change because of what we've learned?

Is sharing for treatment the same as sharing publicly?

Sharing publicly, sharing for treatment, and contributing to service design are different choices. They carry different expectations of privacy, consent, and control. Sharing something for treatment is not permission to use it in research, marketing, or public storytelling.

If someone describes having to repeat a painful history at every handoff, does that change how information travels? If someone tells us a care plan doesn't fit their life, do we reconsider the plan, or expect them to adapt?

These aren't just questions about empathy. They're decisions about how care works.

How should lived experience shape decisions about care?

People should have a meaningful say in how their experiences are represented and used. And when organizations invite lived experience into decisions about services, there needs to be a clear way for that contribution to shape those decisions.

That does not mean every suggestion determines the outcome. It means taking it seriously alongside evidence, clinical responsibility, and the preferences of the person receiving care, then explaining what changes, or why something cannot.

This year's World Mental Health Day theme is "Lived Experiences Heard: Real Voices, Real Change." For those of us building systems of care, the responsibility is not simply to invite people to speak. It's to be clear about how we use what they share, give them a say in it, and be willing to change how we work, not only how we listen to their stories.