Title: The IBISES model: development of a Community Research Link Worker role through action research, to increase accessibility of primary care research within ethnic minority communities

Problem

People from ethnic minority backgrounds are underrepresented in primary healthcare research despite worse health and experience of healthcare services. Academic institutions can perpetuate this inequality with over-reliance on ‘evidence’ syntheses characterised by participation bias, a lack of diversity within research teams influencing positionality and interpretive bias, and a failure to understand a lack of trust and negative prior experiences of research within ethnic minorities.

Approach

We used a Participatory Action Research (PAR) approach to reflect on the evolution of a novel primary care Community Research Link Worker role (CRLWs) across several studies, to build research capacity and challenge researcher positionality and bias in our research. Community organisations supported the recruitment and training of CRLW.

Findings

Five primary healthcare research projects were undertaken using the CRLW model (2022-23) with Black-African, Black-Caribbean, Arab, South Asian, Chinese, and Roma communities (144 participants involved in patient and public involvement events, focus groups and interviews). The CRLWs utilised community networks to recruit participants, facilitated focus groups and co-presented at dissemination events. CRLW co-analysed qualitative data in two projects. Projects included: research prioritisation around prostate cancer screening and treatment (with black men and family carers) , a qualitative study exploring experience of contraceptive services (South Asian, African, African Caribbean women); research prioritisation with the Roma and Chinese communities around lung health and dementia respectively and a qualitative ‘Photovoice’ study with carers of people living with Dementia (South Asian, African/ African Caribbean, Chinese communities) . Through an iterative reflective PAR process with open dialogue between community groups and researchers, we developed a 7-stage successful research training, delivery, and engagement model utilising CRLW (IBISES). 1. Identify key people and organisations representing local ethnic minority communities.2. Build relationships and establish trust.3. Identify and train CRLWs: generic and project-specific 4. Support CRLWs throughout study.6. Evaluate and co-produce next steps.7. Share outcomes of the study with the community.Ideally the CRLW role should also follow a participatory process of priority setting with community members, formulating a research question, and co-design of the research. The CRLW model increased participation by people from ethnic minority communities in our research when compared to previous methods of engagement used by our experienced research team. Community leaders and CRLWs told us that sharing resources and power in the research process builds trust and interest in research participation in their communities.

Consequences

Integrating CRLWs into the research team had a transformative impact on the accessibility of primary care research to communities and on the positionality of researchers working with these communities . We recommend a CRLW model which builds capacity and embeds reflective practice, mutual respect, and power sharing across the research team.