Mehwish Nisar
For decades, migrant communities were studied observed and written about, but researchers didn’t ask what they actually needed.
That is starting to change.
Today, in countries like Australia and the UK, involving consumers and communities in health research is no longer just a good idea — it is expected. Australia’s National Health and Medical Research Council encourages it.
The idea is simple. Research should be done with people. Not about them. With them.
People with lived experience bring knowledge that no textbook can replicate. That’s the whole point of what we call Consumer and Community Involvement. It reframes everyday people as active partners. People who help shape what gets studied, how, and what happens with the findings.
It is a wonderful vision. And in many ways, it is working.
But our research, published in Healthcare in July 2026, found that for migrant communities, there is still a long way to go.
Our study focused on how meaningfully migrant communities are involved in the health research that is meant to serve them.
The gap between policy and practice
Involvement existed. But it was mostly shallow, late stage, and performative.
Migrants were consulted after the big decisions had already been made. They reviewed brochures. They attended community information sessions. Rarely were they asked what the research should focus on in the first place.
Genuine partnership — being part of setting the research agenda, shaping the study design, having a say in governance — was much less common.
We called this the “meaningfulness gap.” The space between meeting a requirement and building a real partnership.
The burden of representation
Researchers often relied on just one or two community members to represent entire migrant populations. Usually English-speaking, more established in the community, and the most “accessible.”
This means some of the most vulnerable people — newly arrived refugees, non-English speakers, undocumented migrants — were often missing from the conversation.
It is a lot to ask of any individual. And it is not their fault. The system has not yet made it easy enough for everyone to be part of the conversation.
These communities want to be involved. What holds them back are structural barriers, not a lack of willingness.
The structures, not the people
This is not about blaming researchers or communities. The whole system needs an upgrade.
The structures themselves make deep involvement difficult. Funding timelines are often too short for genuine relationship-building. Ethics processes were not always designed with marginalised communities in mind. Governance frameworks tend to reward compliance over co-design.
With the right support, this can change. Procedural compliance is not enough. We need real reform.
That means creating space for longer, more community-led processes. Developing smarter, more inclusive recruitment approaches. And inviting migrant communities to co-design research from the beginning, not review it at the end.
Health research is most powerful when it reflects the lives of everyone it is meant to help. We are hopeful that with the right reforms, it can.
Dr Mehwish Nisar is a medical doctor, University of Queensland researcher, and committee member of the Public Health Association of Australia’s International Health Special Interest Group.
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