8 April 2026
From Listening to Letting Go: Why Health Systems Must Share Power with Lived Experience
By Dr Ritu Ghosh, Executive Director, GPZL
I remember a conversation with a community member during a field visit a few years ago. We were reviewing what, on paper, looked like a well-designed health intervention. Coverage was improving. Indicators were moving in the right direction.
And yet, she said something that stayed with me:
“The services exist—but they are not for people like us.”
That single sentence captured what months of data could not.
It made me reflect on a persistent blind spot in how we approach health systems strengthening. We invest heavily in designing for communities, but far less in designing with them. And even when we do engage, it is often too late—or too little.
The Illusion of Being “People-Centered”
We often describe health systems as people-centered. But if we are honest, many systems are still built around institutions, protocols, and professional hierarchies—not around the lived realities of those who rely on them.
Lived experience is frequently invited into the room—but rarely given a seat at the table where decisions are made.
This is not just a gap in participation. It is a gap in power.
Why Lived Experience Is Not Optional
In my work across different countries and health contexts, one thing has become increasingly clear: lived experience is not anecdotal—it isoperational intelligence.
It tells us:
- why services go unused even when available
- where stigma quietly blocks access
- how systems feel from the other side of the counter
No dashboard captures that fully.
In the context of Leprosy, this becomes even more critical. Beyond diagnosis and treatment, individuals affected by leprosy often navigate stigma, delayed care-seeking, and social exclusion—realities that remain largely invisible in routine health system metrics. Ignoring these dimensions does not just weaken programs; it risks making elimination efforts incomplete.
From Tokenism to True Partnership
There has been progress. Community voices are more visible today than they were a decade ago. But visibility is not the same as influence.
Too often:
- consultations happen after decisions are already made
- “representation” is limited to a single voice expected to speak for many
- experiences are shared, acknowledged—and then sidelined
We need to move beyond this.
Because listening, while important, is not enough.
At some point, systems must be willing to let go of control.
What It Really Takes to Integrate Lived Experience
This is where the shift becomes uncomfortable—but necessary.
Embedding lived experience means rethinking how systems function:
- At the governance level: Individuals with lived experience should be part of decision-making bodies—not as symbolic members, but as contributors whose perspectives carry weight.
- In program design: Co-creation should begin at inception, not as validation after the fact.
- In financing: Engagement should be resourced. If we value lived experience as expertise, we must treat it as such.
- In accountability systems: Feedback should not be episodic. It should continuously shape how programs adapt and evolve.
This is not about adding another layer to the system. It is about redesigning the system itself.
The Questions We Often Avoid
Of course, this shift raises difficult questions.
Whose lived experience counts?
Who represents whom?
Are institutions ready to share decision-making power?
And perhaps the most uncomfortable one:
Are we, as professionals, willing to accept that we do not always know best?
There are no easy answers. But avoiding these questions has costs—programs that look good on paper but fail in practice, and communities that disengage from systems they do not trust.
A Different Way Forward
If we are serious about strengthening health systems—and advancing toward zero leprosy—then lived experience cannot remain at the margins.
It must move to the center—not as a narrative device, but as a structural element.
This means:
- building formal pathways for engagement
- supporting leadership among people with lived experience
- creating safe spaces where dissenting voices are not just heard, but acted upon
And importantly, it means recognizing that this is not a technical fix. It is a cultural and institutional shift.
Closing Reflection
That comment—“the services exist, but they are not for people like us”—still lingers with me.
Because it reminds us of something simple, yet often overlooked:
a system is only as strong as the trust people place in it.
And trust cannot be designed in isolation.
It is built when people see themselves not as beneficiaries, but as partners—when their experiences shape decisions, not just stories.
If the goal is zero leprosy, zero disability, and zero stigma or discrimination then the pathway must be co-created with those most affected—because elimination is not only biomedical, it is deeply social.
Until then, we may continue to strengthen systems.
But we will fall short of transforming them.