RESUMO
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 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 primary healthcare research. METHODS: We undertook a focus group with a purposive sample of 6 members of a Patient and Public Involvement Group (PPIG), and interviews 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. The Cultural Trauma concept was than applied to the template to give a wider theoretical lens. In-depth analysis of focus groups and interviews was then performed based on the template. 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 primary healthcare research reflects wider societal inequalities, to which Cultural Trauma provides a useful lens. However, 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.
THE PROBLEM: People living in poverty, and people from ethnic minority communities may be referred to as 'underserved'. Underserved communities benefit less from health services, and along with other factors, this leads to health inequalities. Primary care research does not include enough people from these communities. This makes the health inequalities worse. WHAT WE DID: This study looks at why people from underserved communities are not included in research. It also looks at what might help. We had focus group discussions with members of a Patient and Public Involvement Group (PPIG). These are individuals who do not have research expertise, but use their lived experience as patients to influence the research process. This group was formed in 2017, from areas where more people live with social disadvantage. We also interviewed local community leaders. Interviews and focus groups ask open questions, so are a good way to explore what people think about an issue. We found a useful theory about how cultural history affects what people can do. We used this to help us to understand how our findings could improve and widen participation in research within underserved communities. WHAT WE FOUND: We found that trust is very important. There needs to be trust between people and organisations. There are also practical reasons people from underserved communities might not be able to get involved in research. Researchers need to be aware of these things, and work with people from these communities throughout all stages of research. Long term relationships need to develop between institutions and people doing research. Understanding each other's culture and history makes it easier to work together.
