Enabling participation of Black and Minority Ethnic (BME) and seldom-heard communities in health research: A case study from the SCAMP adolescent cohort study

Abstract

Our inquiry investigated the barriers to, and facilitators for, the involvement of Black and Minority Ethnic (BME) and ‘seldom-heard’ communities, in a study researching the impact of mobile phone and wireless device usage on adolescents’ cognition, behaviour and mental health. The aim was to co-produce solutions to increase participation, and we used focus groups, telephone interviews, a community event and a public and patient involvement (PPI) café to conduct the inquiry. Five themes emerged from the data: two enablers – the value and benefits of research; and three barriers – concerns about research and about communication, and practical constraints. A central cross-cutting theme, the concept of trust, was evident from the data, and extended across all themes, including across the solutions to nonparticipation. When the data collection and analysis were completed, we ran a symposium for researchers and members of the public to share our findings and to co-produce solutions. The symposium generated ideas about improving participation, including tailoring participant information, engaging with local advocates and involving people in research design and delivery