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 non-participation. 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.