Abstract
The UK standards for public involvement set up a benchmark for researchers to improve how the public is involved in research, acknowledging lay people’s experience, skills and expertise in research. In August 2024, the NIHR launched its “Guiding principles for community engagement and involvement in global health research”, highlighting that research should be shaped by diverse people and communities. Welsh Government has also acknowledged the need for engaging people with lived experience in policy, practice and research. Despite growing efforts to make research more inclusive, evidence shows that many key groups of people remain under-represented in research. Barriers such as language, research culture, transient living situations, and digital exclusion contribute to this gap. These challenges compromise the quality, relevance, and overall integrity of research, ultimately undermining its impact. This pilot study seeks to address these issues by actively promoting the involvement of under-represented communities in research.
Seventeen participants were recruited from four marginalised groups.
1) Ethnic minority communities
2) Refugees/Asylum seekers
3) People with learning disabilities
4) Substance users (people with lived experience of problematic use of alcohol and/or illegal drugs)
A participatory research approach was applied. We grouped participants into four sub-groups based on shared characteristics. Each group took part in two workshops. In Workshops 1, participants discussed strategies for inclusive research collaboration, identified key factors that support community involvement in research, and prioritised areas for co-producing relevant materials to promote research engagement. Various issues were highlighted mainly around access to information, getting the message across, trust, respect, feeling of being valued, person centred approach, and awareness raising. Based on the discussion in Workshop 1, participants worked together in Workshop 2 to produce materials of their choice that could be used by others in the future to promote research engagement with people in their communities.
It is challenging to involve marginalised communities in research. Meaningful community engagement can be achieved through establishing a long-term trust relationship, which requires time, resources, compassion and effort. Based on this pilot work, the team plan to seek future funding to test how the lessons learnt can be applied to wider settings.
Seventeen participants were recruited from four marginalised groups.
1) Ethnic minority communities
2) Refugees/Asylum seekers
3) People with learning disabilities
4) Substance users (people with lived experience of problematic use of alcohol and/or illegal drugs)
A participatory research approach was applied. We grouped participants into four sub-groups based on shared characteristics. Each group took part in two workshops. In Workshops 1, participants discussed strategies for inclusive research collaboration, identified key factors that support community involvement in research, and prioritised areas for co-producing relevant materials to promote research engagement. Various issues were highlighted mainly around access to information, getting the message across, trust, respect, feeling of being valued, person centred approach, and awareness raising. Based on the discussion in Workshop 1, participants worked together in Workshop 2 to produce materials of their choice that could be used by others in the future to promote research engagement with people in their communities.
It is challenging to involve marginalised communities in research. Meaningful community engagement can be achieved through establishing a long-term trust relationship, which requires time, resources, compassion and effort. Based on this pilot work, the team plan to seek future funding to test how the lessons learnt can be applied to wider settings.
| Original language | English |
|---|---|
| Number of pages | 25 |
| Publication status | Unpublished - 2025 |
