Contextualising and challenging under-representation in research in light of cultural trauma: a scoping review and qualitative focus group study

Abstract

Abstract Background Although underserved populations— including those from ethnic minority communities and those living in poverty—have worse health and poorer healthcare experiences, most primary care research does not fairly reflect these groups. Patient and public involvement (PPI) is usually embedded within research studies in the United Kingdom (UK), but often fails to represent underserved populations. This study reviewed current literature and worked with patient and public contributors and local community leaders, situated in a socio-economically deprived and ethnically diverse urban area, to explore under-representation in research. Methods This study had two phases: a scoping review to identify theory and recommendations about engaging underserved groups in health research; two qualitative focus groups, one with a purposive sample of 6 members of a Patient and Public Involvement Group (PPIG), and one with 4 community leaders (representing black, South Asian, Roma and socio-economically deprived communities). An iterative analysis process based on template analysis was used. Focus group 1 was rapidly analysed, and a template created. Findings were presented in focus group 2, and the template further developed. In-depth analysis of both focus groups was then performed based on the template. Literature review and focus group data were triangulated using the concept of cultural trauma as a theoretical framework. Results Wider societal and historical influences have degraded trust in academic and healthcare institutions within underserved populations. Along with more practical considerations, trust underpins personal motivations to engage with research. Researchers need to invest time and resources in prolonged, mutually beneficial engagement with communities of importance to their research, including sharing power and influence over research priorities. Researcher reflexivity regarding differential power and cultural competencies are crucial. Utilising participatory methodologies including co-production demonstrates a commitment to inclusive study design. Conclusions Re-framing evidence-based medicine to be more useful and relevant to underserved populations with the highest burden of ill health is urgently needed. Lack of representation in health research reflects wider societal inequalities, but there are actions that researchers can take to widen representation. This will ultimately help achieve the goal of increased health equity by enhancing scientific rigour and research generalizability.