Barriers and facilitators to the participation of people from Black and Minority Ethnic (BME) Communities in health research: a case study from the SCAMP adolescent cohort study

Abstract

Aim: To investigate barriers and facilitators to BME parental consent for children’s involvement in data-sharing aspects of study on mobile phone and wireless device use (SCAMP). To co-produce solutions to increase participation. Methods: Focus groups, telephone interviews, community event, PPI Café; symposium with public, participants and researchers. Results: Barriers were concerns about the research, practical constraints, poor communication. Facilitators were value of research, benefits to others. Solutions to increase participation were community support and clear, simple communication. Overall, trust in the research and the researchers was a key focus of enabling participation. Sharing recommendations: Symposium generated ideas about improving participation including tailoring participant information, engaging with local advocates, involving people in research design and delivery. Key words: Seldom heard, BME, research participation, co-production, PPI, parental consent