NIHR’s CRN South London holds regional EDI Symposium

The NIHR’s Clinical Research Network (CRN) South London hosted an Equality, Diversity and Inclusion (EDI) Symposium on Friday 25 February.

The meeting was Co-Chaired by CRN South London’s EDI Lead Chifundo Tsaka and Deputy Chief Operating Officer Dawn Beaumont-Jewell, and attended by more than 60 people. The EDI Symposium was intended to be a meeting of action and its aim was for participants to agree on common principles to add to business planning for the next financial year to demonstrate consistency and sustainability of EDI action across the region.

Chifundo commented on what an opportune moment this was to hold an EDI event as Race Equality Week, LGBTQ month and International Day of Women and Girls in Science also took place in February. Dawn said that local clinical research networks have been asked by the Department of Health and Social Care to ring fence 2% of their budgets in the coming financial year to support under-served communities and their inclusion in research. She said: “There have been many exciting developments and much good work in the EDI space across the region, so now is the time to pull it all together.”

The first speaker, Fay Scott, Senior Public Involvement Manager at the NIHR’s Centre of Engagement and Dissemination, spoke about the Race Equality Public Action Group (REPAG) that she founded and co-chairs. The REPAG is a solution-focussed public facing-group whose purpose is to amplify the voices of Black African, Asian and Caribbean heritage people and those of other racialised groups, and to increase their involvement, participation and engagement in research.

The REPAG holds race equality training for members that is mandatory and ongoing. The group also co-produced a Race Equality Framework for Public Involvement in Research that was piloted by 16 organisations. Its scope is to provide a model for inclusivity in research, increase the recruitment, involvement and participation of Black, African, Asian and Caribbean heritage people in research and hold researchers and organisations accountable for racial equity. Although the framework was developed for race equality, the REPAG received feedback that it worked for other protected characteristics as well.

Fay spoke about why EDI matters at an organisational level and said that it is wrong to expect communities to trust research organisations unless their stories are listened to and understood. She said:

“We are walking on a tightrope with our relationships with communities. They are fractured and delicate and we have to be very sensitised about how we work and nuanced in the way we approach different communities. Those relationships are fractured for different reasons, there is a history and context, and there is the reality of how people are treated and their experience of care and research.”

Ramona Naicker, Information Specialist at Northern Care Alliance presented her tool “Critically Appraising for Anti-racism”. Ramona said although racism can impact a study’s relevance, reliability and validity, this is not something we tend to think about when we critically appraise studies. She identified two areas of concern to be looked at when critically appraising a study for racism. First, under-representation, whereby Black, Asian and Minority Ethnic (BAME) populations are under-represented in clinical and health research whilst being disproportionately affected by some conditions. The second area of concern is interpretation whereby disparities in health outcomes exist and are not appropriately addressed, if at all. She also presented some examples of research studies exhibiting these areas of concern.

Ramona also proposed a call to action for those critically appraising research papers, suggesting a list of things to look out for, including whether BAME participants were recruited in research, whether the samples of BAME participants were representative, whether ethnicity data on BAME participants were full and accurate.

Neha Modha, Patient and Public Interaction/Engagement (PPIE) Manager at CRN South London presented the “Building Research Ready Communities” project that the CRN helped to pilot in Brixton. The Research Ready Communities programme helps local communities to find out about what health research is, how it can benefit them and how to take part in and shape research. The programme also connects communities to researchers and health organisations and offers communities a way to speak out about the health issues that are important to them. Neha described the benefits of the project, gave updates on its progress and spoke about the next steps. Further updates will follow as the results and learnings are analysed.

Angelina Twumasi, Good Clinical Practice Quality Assurance Manager and Recruitment Lead at NIHR/Wellcome King's Clinical Research Facility, spoke about the process of recruitment and pre-screening of participants to COVID-19 vaccine studies. Angelina discussed recruitment to clinical studies from specific diverse communities and difficulties in recruitment due to fear and suspicion around the motives of scientists and researchers. Angelina said she observed that information about clinical research and participation was not reaching specific diverse groups of people, such as Black and Asian communities, people affected by low income, disability and mental health conditions.

Attendees from across south London discussed and presented examples of community engagement and embedding EDI in the research process and identified south London’s under-served communities. The group agreed on six workstreams that will constitute the Charter, which those who were not able to attend the symposium can join:

1. Bring together and integrate current and needed support and guidance packages for participants, communities and researchers.
2. The PPIE teams from CRN South London, Applied Research Collaboration South London, Health Innovation Network South London, participants and research champions will work together to ensure we are continually identifying under-served communities and working to build trust and engagement with these groups.
3. We will build a network of community groups to provide peer support and streamline two-way communication back to the Inclusivity Panel.
4. We will work to understand financial barriers and the funding available to support inclusivity in research, and how this may affect community groups’ and individuals’ participation in this work.
5. Explore and develop a wide social media presence for this work.
6. Explore and contribute to workforce diversity knowledge and support inclusivity in workforce planning.

Everyone who attended the symposium will be invited to join the CRN South London Inclusivity Panel. The panel will work together on the agreed workstreams, and provide a sense check for systems and activities across south London, to enable the furthest possible reach in research accessibility. The CRN South London is aiming to hold a face-to-face meeting of the Inclusivity Panel to agree on the terms of reference for the group, agree leads for the above workstreams, delivery timelines and ongoing promotion of the group's activities.