Terms untangled – acronyms used in this post:
GBM – Glioblastoma
PPIE – Patient and public involvement and engagement
PRIME – brainstrust’s Patient Research Involvement Movement
The impact of brain tumour patient involvement: Future GB and the Glioblastoma (GBM) community
This week we announced that Brain Tumour Research are supporting brainstrust’s Patient Research Involvement Movement (PRIME) to further support our mutual goal to accelerate clinical research. Working with Brain Tumour Research will give even more momentum to our mission of improving current clinical research through providing top level patient and public involvement and engagement. Bringing patients closer to research, and research closer to patients.
As we look forward to the great work we will do in partnership, we can also reflect on the impact of PRIME so far and how this can drive our future work. Since launching PRIME, brainstrust has offered support to many studies that aim to improve the standard of care for those diagnosed with a brain tumour, including GBM, as well as offering opportunities to support clinical research that would go on to improve the quality of life for the many enrolled. The Future GB trial is an excellent case study on the impact of patient involvement in research.
Patient involvement in Future GB
Through the coordination of patient involvement, brainstrust helped to secure £1.7m of funding for a ground-breaking Glioblastoma study, known as Future GB, which began in November 2020.
Led by Professor Puneet Plaha, the study aims to determine the best technology a surgeon can use to minimise the risk of damaging brain function while removing as much of the tumour as possible. As co-investigators, brainstrust provided platforms for the GBM community to share its insights on some of the implications around the study, involving members of the community with mutually beneficial conversation with the research team.
The patient and public involvement affirmed the relevance of the study, and Future GB was the first GBM study to ever rank quality of life for its patients as the primary goal, putting their needs and wellbeing first.
This undoubtedly proves why the PPIE support which PRIME offers is so integral to moving care for our community forward. Further, why it is so significant that brainstrust and Brain Tumour Research are working together to make sure the PRIME service thrives and reaches and supports as many clinicians and researchers as possible.
“Thank you to Brain Tumour Research for coming onboard to accelerate this work. As we increase our capacity to grow PRIME, we can look forward to raising the bar for PPIE in the clinical research landscape and subsequently creating positive change in how care for brain tumour patients evolves as we move into the future.”
Adam Thomson – Patient Involvement Officer, brainstrust