Engaging refugees and asylum seekers as community research partners: key undertakings from the RÉAC! research project

In the landscape of public health, a quiet but powerful shift has been taking place: the recognition that the people who use services are often the best experts on how those services should work. This idea, known as participatory research, moves beyond simply asking people for their opinions after a study is finished. Instead, it invites them to sit at the table while the research is being designed, conducted, and analyzed. For refugees and asylum seekers—individuals who have been forced to leave their homes due to conflict or persecution—this approach holds special weight. These individuals possess a deep, lived understanding of the barriers they face, yet they are rarely included in the governance of the projects meant to help them. When research ignores this lived experience, the resulting policies often miss the mark, failing to address the real needs of the community. The question then becomes not just whether to include these voices, but how to do so in a way that is safe, respectful, and genuinely empowering.

A team of researchers in Canada recently tackled this challenge through a project called RÉAC!, which ran from 2021 to 2024 across the provinces of Québec and Ontario. The project aimed to understand how community and public organizations could work together to support the health and well-being of refugees and asylum seekers, a need that became urgent during the pandemic. The researchers decided early on that they would not just study these communities; they would partner with them. They recruited six individuals with lived experience of forced migration to join two advisory boards, one for each province. These board members were not merely subjects to be observed; they were granted the authority to review research goals, validate data collection tools, and help shape the final findings. To make this work, the team adapted an existing framework for public engagement, tailoring it to address specific hurdles like language differences and the fear of deportation that might prevent asylum seekers from speaking openly.

The process began with a deliberate effort to build trust. The researchers held orientation sessions designed to break the ice, ensuring that everyone, from the academic researchers to the service users, started on equal footing. They clarified roles and expectations from the very beginning, making it clear what each person could contribute and what they might gain. Communication channels were chosen based on the preferences of the board members, ranging from email to WhatsApp groups, and language support, including Spanish interpretation, was provided whenever needed. Crucially, the team established a safe environment where every contribution was treated with respect. They implemented a rule that guaranteed at least ten minutes in every meeting for the service users to speak before others contributed, ensuring their voices were heard first and given significant weight.

As the project progressed, the results of this inclusive approach became visible. The initial trust-building allowed the board members to move from passive participants to active leaders. Over time, these individuals gained confidence, transitioning from simply typing thoughts into a chat box to speaking up in meetings and even co-analyzing the data. By the end of the project, they were formulating their own policy recommendations to improve service accessibility and quality. Two of the board members went so far as to co-present the research findings at various events and were invited to co-author scientific articles, including the report on this very project. The researchers observed that this process did more than just improve the study; it empowered the participants, helping them develop a sense of agency and initiative.

However, the journey was not without its complexities. The researchers noted that while the board members were chosen for their lived experience as refugees or asylum seekers, they also held professional roles within the community sector. The project initially focused too narrowly on their identity as service users, overlooking the unique insights their professional backgrounds could offer. Additionally, despite receiving compensation for their time, the board members faced significant time constraints, balancing their advocacy work with their other responsibilities. These challenges highlighted that while meaningful engagement is possible, it requires constant attention to the full scope of a person's identity and life.

The findings suggest that when refugees and asylum seekers are treated as true partners in research, the outcome is a more relevant and effective study. This approach not only strengthens the quality of the data but also fosters cross-sectoral collaborations that can lead to tangible improvements in health systems. By creating a space where lived experience is valued alongside professional expertise, the RÉAC! project demonstrated that participatory governance can generate actionable recommendations that truly reflect the needs of the community. The study concludes that such models are essential for building health systems that are equitable and accessible, proving that the people most affected by a problem are often the most capable of helping to solve it.