This webinar, hosted by Sano Genetics and featuring representatives from Newcastle University, Congenica, UK CRC Tissue Directory and Co-ordination Centre and Sano Genetics, focussed on the topic of diversity in clinical trials. The speakers discussed how to promote diversity in research participation, the importance of patient engagement and involvement, and how to flag potential issues earlier in the research process.
The link to the full webinar is here; a brief summary is below for easy reference.
Mavis is a postdoctoral research fellow at Newcastle University. She is currently exploring issues surrounding research participation and ethics, with a focus on aligning research practices to meet people's expectations. Mavis has worked with large-scale research institutions, including the UKCRC Tissue Directory and Co-ordination Centre, and is an expert in global biotechnologies and genomics. She is also a member of the Genomic England disparity subgroup.
Charles is a patient advocacy engagement lead at Congenica, a genomics diagnostic platform company based in the UK. With over 26 years of experience in genomics research, Charles is passionate about bridging the gap between clinicians, scientists, and patients to improve the lives of those affected by rare diseases.
Jessica works for the UK CRC Tissue Directory and Co-ordination Centre, a project that supports and improves biobanking nationally through online directories and data repositories. Jessica is focused on patient engagement and involvement to increase diversity in research participation.
Mavis Machirori, a postdoctoral researcher at Newcastle University, emphasized the importance of context and diversity in clinical trials. She discussed her experience working with black and South Asian women in research on familial cancers, which helped her understand how people navigate health systems and make decisions about participating in research. Mavis also highlighted the need to think beyond the narrow sense of diversity in research and consider the structures that impact the diversity and representation in research.
Charles, in agreement with Mavis, shared his personal experience with rare diseases and emphasised the importance of patient engagement in research. He discussed the Hundred Thousand Genomes Project, which involves patients in the research process and allows them to have direct input on everything that occurs. Charles also stressed the importance of engagement and involvement in the research life cycle and getting the word out to places where others can find information.
Jessica, with knowledge as an engagement lead for the UKCRC Tissue Directory and Coordination Centre, emphasised the need to recognise that there are different ways to involve people and improve patient engagement and research participation. She highlighted the need to explain research and raise awareness about it in ways that are tailored to different groups, and to ensure that clinical trial patient populations reflect real world ones.
The panelists also touched on how to flag potential issues earlier in the research process. Charles pointed out that involving diverse groups of people in research can help identify potential issues sooner. Jessica gave an example of a surgical intervention that was designed for a specific group of people, but might not be as useful for other groups; she suggested that involving diverse groups in testing initially could have flagged this issue sooner.
This discussion highlighted the importance of engagement, involvement, and diversity in research. The panelists emphasised the need to involve diverse groups of people in the research process, from testing to evaluating the outcomes, and to recognise that there are different ways to drive patient engagement and improve diversity in clinical trial patient recruitment. By involving patients and other stakeholders earlier in the process, potential issues can be recognised and addressed, and more effective and equitable research can be conducted.