The figures for Black and Asian participants are stark. Part of the reason that the NHS DigiTrials recruitment approach was not effective in achieving an ethnically diverse population is that comprehensive data is not held centrally by NHS England. Better ethnicity data availability could enable better invitation targeting and help us improve in this area, but this is a very sensitive area that needs careful consideration.
It is clear that there are wider barriers to participation in research, including mistrust in clinical trials and the healthcare system, the need to travel or take time off work, language barriers and perceived low personal relevance. More work is needed to look at how to best address these challenges.
The early successes of NHS DigiTrials, while encouraging, are also putting a brighter spotlight on our current limitations. Being able to start with the whole population and offer opportunities to participate takes us forward, but it is by no means the whole solution.
These problems are complex and multifaceted and collaboration with research partners and communities is going to be the key. In approaching this work, one of our most important assets will continue to be our patient and public co-development panel, a group of incredibly committed people from different backgrounds and ages that helps us design and develop the service and improve the way we communicate with people.
Sadly, we recently lost one of our panel members, Dolapo Ogunleye. I think the blog post she wrote last May sums up some of the challenges we need to address. As we continue to develop our service, Dolapo’s influence and legacy will continue as we strive to continue to find ways to widen opportunities to participate in research, improve diversity and ensure clinical research works for everyone.