Citizen science as an approach for engaging underrepresented communities in codevelopment of health research

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 prioritize active and meaningful patient and public engagement, including from underrepresented communities, where community voices are included throughout the research process. This commentary explores how a citizen science approach can be applied to enhance engagement of underrepresented communities and support co-developing research questions that reflect community needs.

We present a case example of an ongoing project working with 2S/LGBTQQIA+ communities to codevelop a health research program centered around 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, their application in the example .

The case example demonstrates how citizen science can be used to codevelop a research program that reflects community needs, balancing large-scale public engagement with collaborative cocreation. Prioritizing active community engagement throughout the research process promotes transparency and inclusion, setting a new standard for collaborative research.

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.