Citizen Science as an Approach for Engaging Underrepresented Communities in Health Research to Generate Research Questions and Priorities

Engaging patients and public in health research ensures results remain relevant and responsive to community needs. However, meaningful engagement with underrepresented communities remains challenging, and this lack of representation can perpetuate ongoing inequities in health research. Citizen science offers a flexible methodological approach to support active and meaningful patient and public engagement, including from underrepresented communities, where community voices are included throughout the research process. In this commentary, we explore how a citizen science approach can enhance engagement of underrepresented communities in health research for generating research questions and priorities. We present a case example of an ongoing project working with 2S/LGBTQQIA+ communities to co-develop and co-prioritize research questions about chronic pain using citizen science. The project includes a nationwide online platform, group workshops, and consensus approaches, with activities guided by an advisory committee of 2S/LGBTQQIA+ individuals. We describe the European Citizen Science Association's ten principles of citizen science, demonstrate their application in the example, and discuss how citizen science can be used to support generating research questions in additional health contexts. Prioritizing active community engagement throughout the research process promotes transparency and inclusion, setting a new standard for collaborative research. The case example demonstrates how citizen science can be used to generate research priorities that reflect community needs through balancing large-scale public engagement with co-creation. Citizen science holds significant potential for broader application across diverse health domains, offering an innovative alternative to traditional methods of priority-setting, and provides a flexible framework for engaging underrepresented communities to advance health equity.