NIHR Team Science - Ethical framework for working with African and Caribbean communities in research

National and global initiatives and policies including the National Institute of Health Research (NIHR) Research Inclusion Strategy 2022-2027, the UK Research and Innovation’s (UKRI) Equality, diversity and inclusion (EDI) strategy underscore the need for equitable and ethical research with underserved communities. It has been widely recognised that individuals of African and Caribbean heritage are underserved and have limited representation in clinical, biomedical, health and social care and population-based research (add some statistics). In response these challenges, guidelines including the NIHR Race Equality Framework, INCLUDE Ethnicity, INVOLVE and MRC frameworks, UK standards on public involvement and UKRI guidelines on ethical research have been developed to address these challenges. However, these frameworks and guidelines are targeted at researchers and institutions and not communities, do not address critical ethical issues specific to African and Caribbean communities particularly in a historical context of colonialism and in some instances, have reinforced inequalities and resulted in broken trust. For example, recent community engagement events revealed a strong distrust in research by community members: I’m very wary about research and experiments on Black people right now. Sometimes they even use or own people as go-betweens without them realising – quote from community member. Additionally, there is limited information on practical implementation and formats that are culturally-appropriate, accessible empowering the African and Caribbean community to engage. It is imperative that these communities are empowered to understand research processes, their different roles within the research cycle, the ethical implications of getting involved in research in different capacities using to maintain the power balance with academic researchers, improve accountability and ensure the community priorities are at the forefront of research projects. The aims of the proposed research will be to co-develop an ethical framework for working with African and Caribbean communities in in applied health and social care research using community-based participatory research methods