Development of a community research link worker role to enable culturally tailored research and empower marginalised communities to participate: the IBISES model

Background People from ethnic minority and socioeconomically deprived backgrounds remain underrepresented in primary healthcare research despite experiencing worse health outcomes and healthcare experiences. Traditional engagement approaches often maintain power imbalances by keeping control within academic institutions, failing to achieve meaningful representation or change.

Aim This paper describes the iterative development of a model of community engagement across four research projects, aimed at increasing research participation from underserved communities through culturally appropriate co-design and building reciprocal academic-community relationships.

Methods Using Participatory Action Research methodology, we developed the IBISES model and Community Research Link Worker (CRLW) role through partnerships with voluntary sector organisations serving Black African and African Caribbean, Roma, Chinese, and South Asian communities in South Yorkshire. CRLWs were identified through community organisations, received research training, and joined project teams to lead recruitment, data collection, and support analysis. After each research activity, we conducted debriefing discussions and team meetings to refine the approach.

Results The CRLW approach was implemented across four studies: a prostate cancer priority-setting project with African &Caribbean men, a contraception research study with women from ethnic minorities, a lung health priority-setting initiative with the Roma community, and a photovoice study examining diverse experiences of aging and dementia services. These projects demonstrated the CRLW model’s effectiveness in accessing traditionally excluded communities, uncovering crucial cultural contexts, and generating meaningful research outputs and community impacts. Through iterative development, we established the IBISES model (Identify community, Build relationships, Investment in training, Support CRLWs, Empower through co-production, Sustain relationships), which provides a framework for implementing the CRLW approach.

Conclusion The CRLW role enables authentic power-sharing in research, addressing both moral imperatives for inclusion and practical needs for representative evidence. By investing in communities and recognising cultural expertise, this approach moves research engagement toward genuine citizen control and partnership. The IBISES model offers a practical framework for researchers seeking to enhance inclusivity while potentially contributing to greater diversity in academic research careers over time. Further work is needed to explore scalability across different research contexts and evaluate the impact on CRLWs themselves.