Improving black voices in health research; 1.0
Research type
Research Study
Full title
Enhancing Representation of Black ethnic minority groups in Public and Patient Involvement and Engagement (PPIE) Biomedical and Healthcare Research: Strategies for Overcoming Inclusion Barriers and Establishing Trustful Partnerships
IRAS ID
360745
Contact name
Natalie Darko
Contact email
Sponsor organisation
University of Leicester
Duration of Study in the UK
2 years, 2 months, 19 days
Research summary
This research explores how to improve the representation of Black ethnic minority communities in patient and public involvement and engagement (PPIE) in health research. Patient and public involvement entails patients and the public working together with researchers to prioritise, plan, conduct and disseminate research to ensure research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. Engagement covers disseminating research outputs in ways that are meaningful and easily accessible to patients and the public. Although PPIE is encouraged in research, Black voices are often underrepresented, which can lead to health studies that don’t fully reflect the needs and experiences of these communities.
The study will work closely with Black participants to understand what helps or hinders their involvement and engagement in health research. It will be divided into 2 work packages. Work package 1 will use surveys and interviews with Black people to investigate barriers and facilitators to black representation in PPIE and strategies to improve this. Work package 2 will use focus groups with Black participants and researchers to investigate what is impactful PPIE. The aim is to identify practical ways to make research more welcoming, respectful, and relevant to Black communities.
Importantly, the study focuses on strengths—not just barriers. It will highlight community assets, cultural knowledge, and lived experience that can enrich research. Findings will be used to develop tools and guidance that help researchers involve Black participants more meaningfully and ethically. By listening to and learning from Black communities, this study hopes to build trust and improve how health research is done—so that it better serves everyone equitably.REC name
London - Queen Square Research Ethics Committee
REC reference
26/PR/0182
Date of REC Opinion
7 May 2026
REC opinion
Further Information Favourable Opinion