Brain Tumour Support NZ presents at NANOS 2023
by Chris Tse
Chris Tse, chair of Brain Tumour Support NZ (front row, 2nd from right), delivered the keynote address in the Patient Support and Strategies session at the New Zealand Aotearoa Neuro-Oncology Society Annual Conference (NANOS 2023) in Queenstown on 26th August 2023.
It’s not often that a patient advocate is invited to deliver a keynote address at a medical or scientific conference, so when the co-chair of the NZ Aotearoa Neuro-Oncology Society (NANOS) asked me to speak at their annual meeting in Queenstown I had no hesitation in accepting.
This was the inaugural annual conference for NANOS, which was formed following a landmark meeting of clinicians, researchers and patient advocates in Auckland in February 2023. NANOS co-chairs Dr Catherine Han (medical oncologist, Auckland) and Dr Thomas Park (Centre for Brain Research), and committee member and conference convenor Dr Tania Slatter (University of Otago), put together an impressive one-day programme covering a range of topics from the clinical management of brain tumours to basic science and patient support.
My presentation “Bridging communities, breaking barriers, building progress” focused on highlights from the 5th Biennial IBTA World Summit of Brain Tumour Patient Advocates, which I attended in Vienna in June 2023. The IBTA World Summit is all about collaboration, which very much reflects the ethos of the organisers, the International Brain Tumour Alliance (IBTA).
“Bridging communities” can apply to collaboration between teams of scientists so that unnecessary competition and duplicated research efforts are avoided. It can also mean collaboration between scientists and clinicians so that new discoveries in the lab are brought to the clinic more quickly. Or it can mean collaboration between patient advocates and both clinicians and researchers, to ensure patient-centred care and to better inform research priorities.
Patient advocates want to be included, or at very least consulted, in decisions relating to brain tumour treatments, care and research. The NANOS leadership have been very aware of the need to include patient advocates from the very beginning, which I deeply appreciate. Nothing about us, without us.
Chris Tse
The “breaking barriers” part of my presentation looked at the vexed issue of brain tumour clinical trials. Much of the discussion in Vienna was about how to improve participation in clinical trials (despite the poor prognosis only around 10% of glioblastoma patients enrol in clinical trials) or how to design better trials. These questions fade into insignificance in countries like NZ where there are few or no clinical trials available. In his NANOS 2023 address, Dr Ziad Thotathil (radiation oncologist, Waikato Hospital) presented survey results showing that only one of the seven major NZ hospitals were currently offering a brain tumour clinical trial.
Clinical trials are absolutely vital in achieving better outcomes for brain tumour patients. The NCCN Guidelines for CNS (central nervous system) Tumours lists enrolling in a clinical trial as part of the standard-of-care for many brain tumour types. With very few clinical trials available to them, NZ brain tumour patients are missing out on opportunities to access the latest treatments.
Clinical trials occur at the later stages of the drug development process following years of basic science and translational research, so it was heartening to see so many young research scientists attending NANOS 2023. I was very impressed with some of the research on display at the lunchtime poster session which showed there is no lack of passion or enthusiasm for brain tumour research in our academic institutions.
Kudos must go to Thomas, Catherine and Tania for curating such a wide and varied scientific programme for NANOS 2023. Presentations from specialists representing neurosurgery, oncology, nursing and pathology updated delegates on the latest advances in the clinical management of brain tumours. Similarly, the research presentations were an impressive collection highlighting the brain tumour research being undertaken in some of our universities.
Overall, the formation of NANOS and the successful completion of their first annual conference is a significant step forward from where we started - a passionate but disparate group of clinicians, researchers, allied health practitioners and patient advocates. We now have a foundation from which to grow and expand. NANOS will provide a collective voice to represent the NZ brain tumour community in engagement with government, industry, academia and even on the international stage.
By bridging communities and breaking barriers we’re building progress, which to families in Aotearoa New Zealand living each day with a brain tumour diagnosis, is a source of hope and encouragement.
Note: Chris Tse is a senior advisor to the International Brain Tumour Alliance (IBTA) who provided him with a travel grant towards his attendance at the IBTA World Summit in Vienna. Chris is also the patient advisor on the executive committee of the NZ Aotearoa Neuro-Oncology Society (NANOS).