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

## TL;DR

A new model called IBISES and a role called Community Research Link Workers were developed to involve marginalized communities in health research through cultural co-design and power-sharing.

## Contribution

The novel IBISES model and CRLW role enable culturally tailored research and authentic community engagement.

## Key findings

- The CRLW model successfully engaged underrepresented communities in four health research studies.
- The IBISES framework provides a practical approach for building reciprocal academic-community relationships.
- The model uncovered crucial cultural contexts and generated meaningful research outputs.

## Abstract

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.

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.

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.

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.

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.

People from ethnic minority backgrounds and those facing economic hardship are often left out of health research, even though they tend to have worse health outcomes. Traditional research methods don’t meaningfully include these communities.

Researchers developed a new model called IBISES and created a role called “Community Research Link Workers” (CRLWs). These are people from the communities themselves who are trained to help with research projects.

The researchers partnered with community organizations serving Black African, Caribbean, Roma, Chinese, and South Asian communities in South Yorkshire. They identified community members to become CRLWs, trained them in research methods, and made them full members of research teams. These CRLWs then led efforts to recruit participants, collect data, and help analyse results.

This approach was tested across four different health studies - covering topics like prostate cancer, contraception, lung health, and dementia services. The CRLW model proved effective at reaching communities that are usually excluded from research and uncovered important cultural insights that wouldn’t have emerged otherwise.

This was developed into step-by-step approach that researchers could use again: Identify communities, Build relationships, Invest in training, Support the link workers, Empower through working together, and Sustain the relationships over time.

This approach genuinely shares power with communities rather than just consulting them, leading to better research that represents diverse populations. It could also help more people from these communities eventually pursue research careers themselves. The researchers conclude this model offers a practical way for other researchers to make their work more inclusive and representative.