Research Priority Setting with Communities

We received Research Culture funding from Research England, to explore research priorities with local communities. We engaged with the Chinese community, working with Sheffield Chinese Community Centre, about dementia. We also engaged with the Roma community, working with Care for Young People's Futures, about lung health. 

This project aimed to place communities at the centre of two NIHR priority research areas, dementia and respiratory disorders, as a step towards citizen control of the research agenda. Building on pre-existing relationships with local ethnic minority communities, we identified and trained Community Research Link Workers (CRLWs) from the Chinese and Roma communities, to undertake patient and public involvement sessions within their communities.

The CRLWs carried out priority setting exercises over two patient and public involvement meetings, in relation to dementia in the Chinese community and lung health with the Roma community. The first meeting involved a lay introduction to the topic, and a discussion to draw out the concerns of the community members. A rapid literature review was then undertaken by the academic researchers. The main findings were presented in a lay format at a second meeting, with further discussion to establish where the community felt that more research was needed.

Outcomes of this project:

• Increased understanding between researchers and community members, providing a starting point for further co-designed research. 

• Increased capacity within communities to engage with and influence research.

• Further development of the CRLW model, which can be flexibly applied across different communities and research areas. 

Next steps:

• Dr Josie Reynolds is currently doing further work with the Chinese community about dementia, in the PMIMMs project (see current workstreams).

• Johanna White is leading on developing a patient research group within the Roma community, to empower them to advocate for themselves and contribute to research that will benefit their community.