Making medical research programmes and clinical trials more accessible and inclusive

In March this year, we attended the webinar ‘Recruiting to medical research programmes and trials – how can we be smarter and more equitable?’ hosted by Claremont Communications.

This webinar showcased examples and lessons learnt in participant recruitment from medical research programmes and clinical trials in the UK. Specific examples included the NHS-Galleri trial, Our Future Health and the ongoing work for the GlobalMinds study, which is recruiting individuals living with severe mental health conditions.

Here are our three take-home points from the webinar.

1. Engage with local community groups to build trust

Community and grassroots groups are the heart of their local communities and can help you to build awareness, engagement and trust in your research.

At this event, speakers shared how they created authentic partnerships with these groups as early as possible in the process. Doing this allowed them to reach communities that have been historically underrepresented in medical research and clinical trials through a trusted source.

This can open doors for as many people as possible from diverse backgrounds and different demographics to be involved in research.

2. Language is key

We know that positive, supportive language can have a huge impact on people living with, and affected by, T1D. The Language Matters publication from NHS England is a key resource for this.

We heard how being aware of the language that you use can help encourage and increase participation in clinical trials and medical research. Panel members noted that using terms such as ‘hard-to-reach’ and ‘ethnic minority’ can be exclusive, and incorrect in a global context.

Instead, they suggested terms such as ‘historically excluded’, ‘global majority’ or ’under-representative groups’, which are more accurate and may help to promote inclusivity.

We also heard how adapting the form of communication or spoken language can increase accessibility to underrepresented groups, such as non-English speakers and individuals living with disabilities.

3. Understand your audience

Understanding and recognising the barriers to, and motivations behind, participation in research of the communities and individuals you are trying to reach is key. We heard from GlobalMinds how using behavioural science methodologies, such as the COM-B framework, can help with this. COM-B looks at how Capability, Opportunity and Motivation can affect Behaviour.

The NHS Galleri trial shared how tailoring communications about the research to different demographics is essential, and how they sought input from public focus groups to do this. This ensured that the message of what the research will do, and why it is important, was delivered consistently.

External factors such as time and location of the trial site and cost of travel may be significant barriers to participation. We heard how the NHS Galleri trial brought mobile units to the community, reducing the impact and cost of travel, and Our Future Health are trialling a walk-in system in community clinics, to remove the pre-booking step that may act as a barrier for some individuals. Our Future Health also shared how using financial reimbursement to compensate people for their time and reduce cost barriers had a positive effect on participation.

The panel noted that while these interventions and incentives may not be possible, or appropriate, for all research studies and clinical trials, the concepts and principles around them may be both translatable and scalable to different research and clinical settings.

Read more information and access the webinar recording on the Claremont Communications blog.