Last year, Neuroendocrine Cancer UK’s Patient Support Co-ordinator, and neuroendocrine cancer patient, Kate, gave a presentation to Ipsen, the manufacturer of Lanreotide, a monthly Somatostatin Analogue prescribed to many members of our patient community. The presentation emphasised the significance of involving patients in future clinical trials and research design.
Subsequently, Kate recently delivered a presentation to Neuroendocrine Cancer patients, highlighting the importance of patient involvement in clinical trials and research design.
During her presentation, Kate explained the numerous roles patients can play, such as setting research priorities, serving on Trial Steering Committees, reviewing Patient Information Leaflets (including the language used), meeting with researchers, contributing to protocol synopsis, assisting with recruitment, discussing practical considerations (such as mobility, travel, and home care for participants), fundraising, participating in study reporting, ethical reviews, and more. She emphasised that it is crucial for patients to have a seat at the table.
According to Kate, “As patients, if we don’t speak up, clearly express our needs, engage, advocate, and, above all, persist, we run the risk of not being included in the design of that one Clinical Trial that might just deliver the breakthrough that the Neuroendocrine Cancer community desperately needs.”