Since the onset of the COVID-19 global pandemic, it feels safe to say that there is a heightened awareness of the inequalities in health and social care research. Those historically marginalised from mainstream services continue to face multiple barriers to accessing and engaging in research. For the last 18 months or so, NIHR has been paying more attention than ever to these issues and has made a strong commitment to support Equality Diversity & Inclusion (EDI) across the health and social care research system. For instance, descriptions of how EDI has been addressed is a requirement on NIHR application forms.
Promoting EDI to our local researchers has been an interesting and educational journey. Our 2021 RDS SE Stakeholder Event focused on illustrating EDI in research, its challenges, and the potential ways we can overcome these. Dr Esther Mukuka (NIHR Head of EDI) and one of our guests, gave an honest and enlightening presentation about reframing diversity and inclusion, and understanding the role of NIHR as a funder. She talked about the NIHR’s work, outlined their future ambitions, and explained the difference between the concept of diversity and inclusion. Based on Dr Mukuka’s words, diversity could be described as recognising differences and acknowledging the benefit of having a range of perspectives in research. This includes decision making, design, delivery, and infrastructure. Similarly, inclusion is where everyone’s differences are valued, and the differences are used to enable everyone to participate and thrive.
We've noticed that the definition and scope of EDI is often misunderstood and limited to only considering ethnicity and gender. In reality, EDI is about involving so many more groups such as LGBTQ+ communities, people with learning disabilities, people with educational disadvantage, people living in rural communities, etc. It is also about avoiding potential language barriers and digital exclusion. Please see the Innovations in Clinical Trial Design and Delivery for the Under-Served (INCLUDE) project list for more examples.
Familiarity is growing around the phrase 'EDI in research’ but achieving this seems to be a challenging craft. Like many things in life, one solution doesn’t fit all, but we've found various guidance and tools that researchers can use to critique how inclusive their research study really is. For instance, see the guidance from the INCLUDE project and the helpful summary on how to improve inclusion and the list of under-served groups. INCLUDE also have a free and informative online course. The National RDS EDI team are developing an EDI toolkit to lead users though a range of pertinent questions for designing studies. Detailed guidance and case studies are due in 2022. As part of the INCLUDE Ethnicity Framework, Trial Forge has four generic key questions that researchers can ask themselves to check study inclusivity starting with "who should my trial results apply to?"
With a wealth of new EDI guidance coming to the fore, it felt like an expert voice was needed to bring these to life. We therefore organised a series of EDI sessions for RDS Advisers and invited external speakers to come and share their experiences of breaking down barriers and improving diversity and inclusion. These sessions also provided a safe space for researchers and advisers to discuss any issues and raise questions about different aspects of EDI. Our first session was in January 2021 on ‘creating inclusive care homes’ by Berkeley Wilde and ‘Trans Ageing and care project’ by Paul Willis. Key messages from the sessions were the importance of making it clear who the research is for and being more overt in our participation invitations. Adding rainbow and trans flags to participant facing materials, using positive and inclusive LGBTQ+ images, and respecting gender-neutral terms are effective ways to promote inclusivity. Methods such as peer recruitment or interviewing, and working with local community groups early, are key for engaging marginalised groups.
Following the success of our first EDI session, the series continued with the impact of Covid-19 on ethnic minority communities, how to include people with disabilities in research, and a second discussion on LGBTQ+ research (see Video Resource 9 on our RDS SE website). Later sessions covered improving access to research for people with intellectual disabilities, Stroke, or Transient Ischaemic Attack (see Video Resource 10).
So in summary, when you look at the design of a research study, ask yourself is this research for everyone? If not, why not? A good way to approach this is to try and make your research inclusive for the most vulnerable group, this in turn will help open up your research for all. Your local RDS team is here to support you to develop inclusive studies. Get in touch and we can help you plan research which is mindful of the different values, cultures and needs of your future participants.