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Background <p>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.</p> Aim <p>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.</p> Methods <p>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.</p> Results <p>The CRLW approach was implemented across four studies: a prostate cancer priority-setting project with African &amp;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.</p> Conclusion <p>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.</p>

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

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2025年10月21日

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  • Kate Fryer,
  • Josie Reynolds,
  • Qizhi Huang,
  • Rebecca Mawson,
  • Emma Linton,
  • Habiba Aminu,
  • Johanna White,
  • Ryan Cory,
  • Caroline Mitchell,
  • Janet Brown,
  • Fatima Iman-Nabage,
  • Aaishah Aslam,
  • Sarah Ng,
  • Candice Wang,
  • David Bussue,
  • Sheila Daley,
  • Val Grosset,
  • Carl Case,
  • Lungani Sibanda,
  • Shirley Samuels,
  • Nur Ali,
  • Tanya Basharat,
  • Terezia Rostas,
  • Rosa Cisneros

摘要

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.