Background: Racially marginalised groups are underserved in healthcare and underrepresented in health research. Patient and public involvement and engagement (PPIE) is established as the method to ensure equity in health research. However, methods traditionally employed in PPIE can lead to the exclusion of some communities and exacerbation of existing inequalities, highlighting the need to develop inclusive processes for more inclusive community involvement in health research. We aimed to produce guidance to promote good practice for inclusive involvement of racially marginalised community groups in health research via public and community involvement and engagement.
Methods: The CHecklist for Inclusive COmmunity involvement in health research (CHICO) was co-produced by researchers and three Bristol-based community organisations: Dhek Bhal, My Friday Coffee Morning-Barton Hill, and Malcolm X Elders. After initial conversations and link building with community leaders to develop relationships, researchers attended at least three meetings with each community group to discuss preferred approaches to involvement. Each community group had a different format, and discussions were open and tailored to fit the groups preferences. The meetings were held in the community groups' usual meeting venue. Notes from meetings were reviewed by researchers to identify key themes, which were used to inform the creation of a draft illustration which was then taken back to the community groups for refinement and used to inform the development of written guidance and the final illustration.
Results: Checklist items were structured into three stages: (1) building relationships, (2) reciprocal relationships and (3) practicalities. Stage 1 highlights the importance of building trust with the community group over time through regular visits to community venues and talking to people informally to understand the history of the group, their preferences and needs, and topics that are likely to be of interest to them. Stage 2 focusses on maintaining a reciprocal relationship and understanding how to best to give back to the community. Stage 3 provides guidance on the practicalities of designing and running inclusive community-based involvement activities, including consideration of the venue, format, communication-style, language requirements, social activities, and provision of food.
Conclusions: Our co-produced checklist can guide researchers in how to involve people from different ethnicities in health research that is relevant to their community.
Keywords: Community groups; Diversity; Ethnic groups; Guidance; Health research; Involvement.
Health research needs to be for everyone. For this to happen, people from all backgrounds need to be involved. However, people from ethnic minority backgrounds are often not involved in the design of health research. We wanted to find out how researchers and community groups can work together to make the research process more inclusive. Researchers worked with three community groups in Bristol. These were South Asian, African Caribbean and (majority) Somali community groups. One researcher talked with community leaders to find out if the interests of the research unit was relevant to community members and to understand how each group would prefer to work. Following this, at least three meetings were held with each group. After these meetings, we looked at what was talked about. We suggest that researchers involving community groups in health research follow three key steps. Step 1 is making relationships and covers the importance of building trust with the community. This should be through talking with community leaders and regular visits to the group to get to know members before asking for input. Step 2 is about how to best to give back to the community. This is important to make sure that relationships are fair. Step 3 is about how to design and run activities. This includes thinking about the venue, language needs, social activities, and providing food. Our suggestions can help researchers and community groups to work together on health research. We have made an illustration of our findings for sharing.
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