Case study: the NIHR Race Equality Public Action Group (REPAG)

The NIHR Race Equality Public Action Group (REPAG) is a public-facing group committed to improving race equality in health and care research.

REPAG: 

• Champions the voices of the under-served and the unheard.
• Is solution-focused and transformational in its approach.
• Reaches new audiences in an authentic way, recognising and respecting cultural nuances and sensitivities.
• Facilitates NIHR cross-centre collaboration, optimising resources and reducing duplication.
• Convenes honest conversations aimed at addressing systemic inequalities. 

Why is REPAG important?

Despite efforts to increase the diversity of public contributors, too few of those who work with the NIHR are Black or of African, Asian or Caribbean heritage. Furthermore, we are still failing to connect with certain communities. As a result, we are missing opportunities to innovate and co-create ways of encouraging more people into health and social care research to help us solve health disparities, so that everyone in society can experience better health outcomes.

Feedback from our community consultation events showed that people from Black African-, Asian- and Caribbean-heritage communities want to see organisations doing their best to eradicate racial inequality in a respectful, open and transparent manner. That includes involving these Black African-, Asian- and Caribbean-heritage people as equal partners. We must, therefore:

1. Evaluate our systems and processes to understand where improvements need to be made  
2. Have open and challenging conversations without fear of repercussion, and
3.  Lead change in an authentic way, recognising our faults and learning from them. 

An innovative way of working 🡪 the essence of REPAG   

Building momentum for change 🡪 the aim of REPAG:

REPAG provides a platform for diverse voices to be seen, heard and valued. Examples of what we do and how, include the following:

• Bring people together through our Share-and-Learn events — e.g. bringing together REF practitioners and public contributors to discuss learnings and opportunities to inspire sector change. 
• Get to the heart of matters that matter through open and honest conversations, which are the hallmark of how we work — e.g. our Allyship in Action NIHR event, where we delved into what we mean by ‘authentic allyship’ and what it looks like in practice. 
• Gain new and crucial insight through innovative events — e.g. the NIHR Black Men, Wellbeing and Toxic Corridors event, which created space for black men to share their experiences and perceptions of healthcare in addition to the changes they want to see.

Outputs, outcomes & impact

1. New audiences

The REPAG convenes honest and insightful conversations designed to stimulate learning and improve ways of working in health and care research. It is only able to fulfil that purpose because it has forged relationships with a diverse group of public contributors, beyond the Group’s own membership, who support its work.

e.g. Over 70 public members were involved in co-producing our Race Equality Framework (REF), a large proportion (82%) of whom had never been involved in research before. Their participation was possible because of the Group’s authenticity, and its relationships and connections with diverse communities who, despite their misgivings, trusted us enough to take part in a series of consultation events in summer 2021.

Following their participation in those consultation events, those same public members have remained committed and engaged in REPAG and REF activities. This is a testament to our hard work and continuing efforts to build trust and sustain relationships.

2. New partnerships

In just a short period of time, the REPAG has gained credibility among, and secured the support of, a number of highly respected NIHR-funded institutions and associated partners. 

e.g. Our Race Equality Framework  partner organisations represent a diverse range of organisations: universities (including the University of Oxford), university NHS hospital trusts, a research consortium, a public health department in a local authority and a global private sector organisation (Roche). A full list of organisations, as at the date of publication of the REF, can be found by following this link.

3. Innovative methods

A recent example of the wider impact of REPAG’s work is the Toxic Corridors video.

Published in November 2022, it has (to date) been viewed 1.3k times and was one of the top five most-viewed videos on NIHR’s YouTube for that year.

e.g. Wider impact of the video:

• The NHS now uses it in its race equality training sessions.
• The University of Bath cites it as a resource.
• On the back of it, REPAG has received a request to facilitate action-learning with a patient and public engagement group.

4. Inspiration to others

One REPAG member applied for funding in her own organisation (Keele University) for a Patient and Public Involvement lead to focus on race. This was a result of recognising the importance of carrying out this work in a meaningful way and the need therefore to ensure an appropriate level of resource. The successful candidate has been recruited and is now responsible for implementing the REPAG’s REF in Keele University. 

5. Influence on wider policy and practice

1. Mention of the Framework in Black Maternal Health: Government Response to the Committee’s Third Report (a government response to a report by the Women and Equalities Committee on Black maternal health; Chapter 3 – Research and Data):

“The National Institute for Health and Care Research’s Race Equality Public Action Group has produced a Race Equality Framework (the Framework). The Framework is a self-assessment tool designed to help organisations improve racial equity in health and care research. The purpose of the Framework is to guide organisations in health and care research on their path to racial competence. In so doing, it aspires to eliminate racial inequity in health and care research and to improve equity in health and care outcomes for Black African-, Asian- and Caribbean-heritage communities. The Framework provides a model for inclusivity in research, to increase the recruitment, involvement and participation of Black African-, Asian- and Caribbean-heritage people in research and to hold researchers and organisations accountable for racial equity.”

2. Mention of the Framework in Looking forward: Working with the Medical Research Council (MRC) towards a Public Involvement Strategy, Recommendation 5: 

“MRC public involvement and equality, diversity and inclusion strategies should be integrated, synergistic and cross-reference each other.

We have found that NIHR’s Race Equality Framework for Public Involvement is a useful tool in identifying the actions needed for an organisation to address equity across its functions.

The evidence-based approach offers a systematic method to understand race equity within governance, leadership, training and development and public involvement functions.

MRC could consider applying the framework as a next step in the development of both its equality, diversity and inclusion and public involvement strategies.”

3. Mention of the Framework in Department for Health and Social Care (DHSC) report Future of Clinical Research Delivery: 2022 -2025 Implementation Plan, under people-centred research:

“The vision set out our ambition for more people-centred research, designed to make it easier for patients, service users and members of the public to access research of relevance to them and be involved in its design. To achieve this, delivery of research in community, primary care and virtual settings needs to increase, with delivery designed around the needs of the people participating in it. Alongside this, we will ensure we maintain our world-leading specialist research infrastructure, which provides opportunities for people to access early-phase studies, complex therapies and devices.

Progress in Phase 1:

(…)

the NIHR Race Equality Framework was piloted by industry. This self-assessment tool helps organisations to improve racial equality in health and care research.”

6. Spin-off activity

We recently established our Race Equality Framework Community of Practice network. It is being hosted by partner organisations (Keele University in the first year) on a rotating basis.

e.g. The purpose of the network is to:

• Create a supportive peer-learning environment to help organisations navigate conversations about using the Framework.
• Improve racial competence.
• Enhance organisational learning about the impact of structural racial inequities and how they can be tackled to bring about positive change.
• Constructively advocate for change.

Testimonials from public contributors and partners

Fay Scott, Senior Public Involvement Manager, NIHR

“I founded the REPAG because I had identified, through the lens of public involvement, engagement and participation, a lack of focus on race equality. My intention was to create a safe and constructive space for creative problem-solving, and to give a voice to those who are not heard and whose faces are not seen.”

Kwabena Kimathi, author of the Toxic Corridors poem (link to published quote): 

“After having the privilege of participating as a public contributor in a consultation for the REPAG Race Equality Framework, it was an honour to be invited by Fay Scott to write and deliver a piece for the NIHR.”

“‘Toxic Corridors’ is also personal to me because it is a snapshot of my journey through life as an African man in the diaspora, navigating (not always successfully) through stereotypes, false perceptions and ill-informed expectations, imposed by others (very often institutions) upon me.”

Kalsum Akhtar, Public Contributor:

“REPAG unites stakeholders, communities and organisations to create a safe space where voices are shared. The REF is an example of the importance of collaborative working where the focus is to enhance NIHR’s awareness on race equality in health and social care research. From a public contributor perspective I have found the project a meaningful and reflective experience that is focused on real issues affecting Black African, Asian and Caribbean heritage communities. I am delighted to be part of the REPAG initiative which is an extremely strong example of how communities can impact improvements within the race equality and health research sphere.”

Kalsum is a co-author of an NIHR blog on Why research inclusion leads to better outcomes: An Asian women’s perspective.

Susan Hampshaw, Director – NIHR Health Determinants Research Collaboration (HDRC) Doncaster:

“The REPAG Framework has been valuable and well received in Doncaster. Positives have included peer support sessions – particularly the ‘share and learn’ events. It was during these sessions that the importance of bringing about real change (rather than conducting a tick box exercise) became clear. The Framework (and suggested training) challenged us as organisations to question our own biases in relation to race equality in research. In many senses, this feels like the start of a journey. The Framework required us to enter into conversations that didn’t always feel comfortable. Although embryonic, this feels positive in terms of considering race equality as part of our ‘business as usual.’”

Jon Cole, NIHR Assistant Director, Communications and Inclusion:

“Discussions in the REPAG helped to clarify the issues we wished to address and gave me added personal confidence and empowerment to proceed, in the knowledge that it complements a wider NIHR endeavour. Both are vital for improving the NIHR’s racial diversity and broader inclusion.”

Philip Newsome, Deputy Director of the NIHR Birmingham BRC:

“We are delighted to have adopted the Race Equality Framework. Increasing the recruitment, involvement and participation of Black and African, Asian and Caribbean communities in our research is essential.  By adopting this model, we firmly believe this will be helping to eradicate inequalities in health and social care research.”

Magdalena Skrybant, PPIE Lead, ARC West Midlands:

“Please know that the work you do, together with all the REPAG team, is most appreciated and will help us make health and social care research much stronger through being more inclusive and diverse.”

Mike Rogers, MBE, Deputy Director, Business Transformation, NIHR:

“The REF changes people’s  lives.”

Sophie Duncan, Co-Director, National Co-ordinating Centre for Public Engagement:

“Whilst the Race Equality Framework was designed with health research active organisations, it has provided useful prompts to help us consider all aspects of our work internally and externally and has encouraged us to take action. It has been helpful to be a part of a community of practice, learning alongside and with other organisations committed to EDI, and having input from REPAG members. We have now set up our own Inclusion Advisory Group and are working with members to undertake a review of our work internally and externally, to identify further steps we can take.”

For more information please contact: Repag_enquiries@nihr.ac.uk