Race equality in public involvement
NIHR’s Race Equality Public Action Group (REPAG) aims to give racialised communities a stronger voice in shaping priorities for research
REPAG was established in 2020. The group is co-chaired and led by public contributors of Black African, Asian and Caribbean heritage - each of whom brings their professional and lived experience - working alongside NIHR staff and members of the academic, health and care communities.
The purpose of the group is:
- to strengthen NIHR’s understanding of race inequality in health and social care research
- to advise on actions for NIHR to take to ensure that race equality is embedded in the interactions between the research community and patients, people who use social care services, carers and the public
- to prioritise the voices of those most affected by health and care challenges
Increasing inclusive participation and involvement
We know that the ethnic diversity of those who participate in or shape health and care research often does not reflect that of the population affected by the issue being researched. This means that research often doesn’t meet the needs of the whole population. We want to ensure research is delivered in a way that is informed by a diversity of experiences and addresses health inequalities.
REPAG is part of the NIHR’s commitment to Equality Diversity and Inclusion and our efforts to diversify the voices of those who shape our research agenda. REPAG is focused on race equality in public involvement and specifically on finding better ways to work with Black African, Asian and Caribbean heritage communities.
Why focus on Black African, Asian and Caribbean heritage people?
We know that Black African, Asian, Caribbean heritage people are significantly underrepresented in shaping NIHR research. These groups are also disproportionately affected by health conditions, including COVID-19 , and have a history of mistrust of biomedical research.
Black African, Asian, Caribbean heritage people need to have a stronger influence in shaping the health and social care research agenda and so REPAG and the Race Equality Framework are focused on these communities in particular. However the approaches are generalisable to other racialised groups and across a wider group of diverse communities.
Race Equality resources
REPAG has co-produced or contributed to resources to help organisations and individuals improve racial equality in public involvement in health and care research.
The Race Equality Framework is a self-assessment tool designed to help organisations improve racial equality in public involvement in health and care research.
This report synthesises experiences of health and care for Black African, Asian, Caribbean heritage people and shares their views on how to reduce barriers. It champions the voices of under-served and unheard communities and sets the scene for the Race Equality Framework and why it is needed.
Continuing Professional Development resource on engaging under-served communities
The March 2022 instalment of NIHR Learn Insights discusses how we involve people who have traditionally been under-served by research and explores the highly intersectional nature of inclusivity and the importance of creating psychological safety. The course is for all professions that come together to undertake health research delivery and is available on:
- Insights course on NIHR Learn (for those with a .gov, .nhs, or .ac.uk email address)
- Insights course on NIHR Open Learn (for public, industry and commercial access)
It only takes a few minutes to create an account on the NIHR Open Learn platform.
The NIHR has also supported other resources for inclusive participation in research.
- The Centre for Ethnic Health Research at the University of Leicester has produced guidance to help researchers increase diversity in research and consider the diversity of health and cultural needs of potential study participants
- The INCLUDE Ethnicity Framework, which aims to help trial teams think about which ethnic groups should be included in their trial for its results to be widely applicable, and what challenges there may be to making this possible.
Current REPAG members
Royston John, NIHR REPAG Public Co-Chair, International CEO of National Coalition Building Institute
Fay Scott, NIHR REPAG Co-Chair and founding member, Lead co-creator of Framework, Senior Public Involvement Manager, NIHR
Race Equality Framework partners and early adopters
Alder Hey Children’s Hospital
University Hospitals Birmingham NHS Foundation Trust, in partnership with the University of Birmingham, which includes:
NIHR Birmingham Biomedical Research Centre
NIHR Trauma Management MedTech Co-operative (Trauma MIC)
NIHR / Wellcome Trust Clinical Research Facility Birmingham (CRF)
NIHR Surgical Reconstruction and Microbiology Research Centre (SRMRC)
NIHR Applied Research Collaboration West Midlands (ARC WM)
Manchester University NHS Foundation Trust, which includes:
NIHR Manchester Biomedical Research Centre
NIHR Manchester Clinical Research Facility
University Hospitals Southampton NHS Foundation Trust, which includes:
NIHR Applied Research Collaboration (ARC) Wessex
NIHR Southampton Biomedical Research Centre
NIHR Southampton Clinical Research Facility
Institute of Applied Health Sciences, University of Aberdeen
Midlands Innovation Health
Midlands Partnership NHS Foundation Trust
Staffordshire and Stoke on Trent AHP Council
University of Oxford
NIHR Oxford Biomedical Research Centre
NIHR Oxford Health Biomedical Research Centre
NIHR Applied Research Collaboration for Oxford and the Thames Valley
NIHR Oxford Cognitive Health Clinical Research Facility
The Centre for Reviews and Dissemination, University of York
Roche Products Ltd
NIHR University College London Hospitals Biomedical Research Centre
North Central London Research Consortium
James Lind Alliance
Division of Psychiatry, University of Edinburgh