Engaging citizens to conduct large-scale qualitative research: lessons learnt from a community-engaged research project on queer men's lived experiences of health in Singapore.

Abstract

Introduction HIV science has made significant progress, but community engagement in some contexts remains suboptimal, with marginalized and key populations being left behind. Discriminatory policies, medical mistrust, stigma and a lack of resources remain key roadblocks. Citizen-led, community-engaged approaches hold promise in subverting power structures that reproduce such barriers and allow us to leverage community resources. Discussion We draw on our experience of a collaborative research project between the National University of Singapore and RainbowAsia, a community-based organization addressing the needs of young gay, bisexual and queer men in Singapore. The study focused on stigma, resilience, relationships, sexual partnerships and mental health among Singaporean gay, bisexual and queer men, and commenced in June 2022. Despite being a high-income country, research funding for HIV key populations in Singapore remains sparse, as local funders prioritize less politically sensitive topics while international funders rightfully focus funding on resource limited settings. A citizen-led approach was therefore implemented out of necessity and a desire by community members to translate research into evidence-based programs. We propose a citizen science framework comprising eight key phases, including: (1) developing a research and implementation pipeline, (2) stakeholder and resource mapping, (3) delegation of expertise, (4) creating plans for equity, (5) developing a research plan, (6) generating evidence, (7) dissemination and translation, and (8) plans for sustainability and impact. Cross-cutting processes across all phases include the adoption of deliberative democratic processes, training and mentorship, and (re)negotiation of power and recognition for all stakeholders. A total of 44 in-depth interviews were completed, transcribed, and analyzed by a core research team and 26 volunteer research assistants. The entire study required crowdfunding USD1600.00 for participant reimbursements, but otherwise leveraged academic, community and citizen resources to accomplish the study's outputs. Conclusions Our case study illustrates a microcosm of how research evidence can be generated, disseminated, and translated by citizens and communities into evidence-based programs at the community level. Our framework aligns itself with stakeholder engagement principles, and can provide a roadmap for sustainable collaborative research between academic, community and citizen stakeholders.