Gafari, Olatundun, Bahrami-Hessari, Michael, Norton, John, Parmar, Ranj, Hudson, Marcia, Ndegwa, Leah, Agyapong-Badu, Sandra, Asante, Kwaku Poku, Alwan, Nisreen A., McDonough, Suzanne, Tully, Mark A., Calder, Philip C., Barker, Mary and Stokes, Maria (2024) Building trust and increasing inclusion in public health research: co-produced strategies for engaging UK ethnic minority communities in research. Public Health, 233, 90-99. (doi:10.1016/j.puhe.2024.05.007).
Abstract
Patient and Public Involvement and Engagement (PPIE) is essential for improved research outcomes and reduced research waste. To be effective, PPIE should provide opportunities for diverse groups to contribute to all research stages. However, UK ethnic minority communities remain underrepresented in research. This paper describes strategies adopted in a public health research project that were effective in building trust and increasing inclusion of ethnic minority communities.
The study team of researchers and PPIE partners reflects lessons learnt during the project and describe six main strategies that built meaningful levels of trust and inclusion: 1) early start to recruitment of PPIE partners; 2) relationship-focused engagement; 3) co-production and consultation activities; 4) open communication and iterative feedback; 5) co-production of project closure activities, and; 6) diverse research team.
Meaningful outcomes for the community included the involvement of people from ethnic minorities as research participants and PPIE partners, community wellbeing, co-production of public health recommendations co-presented at the UK Houses of Parliament, and consortium-wide impact evidenced by the enrolment of 51 active PPIE partners.
PPIE partners reflect on their research involvement, offering advice to researchers and encouraging people from ethnic minority communities to take part in research. An important message from PPIE partners is that involvement should not be restricted to projects specific to ethnic minorities but become a routine part of general population research, recognising ethnic minorities as an integral part of UK society.
In conclusion, this paper demonstrates that with appropriate strategies, inclusion and diversity can be achieved in public health research. We recommend researchers, practitioners and policy makers adopt these strategies when planning their public health projects.
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