The All-Party Parliamentary Group on Brain Tumours and Brain Cancer, for which Brain Tumour Research holds the secretariat, convened in Westminster on Tuesday 20th October.
Chaired by Dame Siobhain McDonagh and attended by campaigners and parliamentarians including Baroness Tracey Paul (pictured top left), Lord Rogan, Dr Scott Arthur MP, Gordon McKee MP and Charlie Maynard MP, the meeting focused on the National Institute for Health Research (NIHR) brain tumour consortium and the availability of UK wide genome sequencing for brain tumour patients.
Scrutinising progress of the NIHR brain tumour consortium
Dr Alice Mortlock, Deputy Director of Research Commissioning in the Department of Health and Social Care (DHSC), provided an update on progress of the NIHR brain tumour consortium in her role as Senior Responsible Officer for commissioning the NIHR Research programmes and NIHR infrastructure.
Campaigners expressed concerns about slow progress, lack of transparency about funding allocation and the need for better designed trials.
Dr Mortlock acknowledged delays and reflected that the consortium could have been designed differently as an infrastructure project to speed up its establishment and funding processes, but they are continuously learning, want to accelerate progress and are getting closer to recruiting patients to participate in clinical trials. She also shared how the involvement of patients and carers are helping to shape programmes.
Dame Siobhan McDonagh (left) and Dr Mortlock addressing attendees (right)
When questioned about funding being accurately allocated, Dr Mortlock assured attendees that there is a framework with monitoring and escalation, including accountability to DHSC’s Chief Scientific Adviser, and phased rather than upfront release of funds.
She emphasised how the consortium will play a key role in delivering clinical trials and create an environment where industry, including technology developers want to collaborate and find innovative solutions.
“Through 48 partners who have their own relationships, we can have a central place to facilitate trials”, she added.
The ‘postcode lottery’ issue was raised, with campaigners expressing frustrations about lack of trials available across the UK and the need to travel long distances. Needs for a more coherent and collaborative approach to give patients better outcomes were also discussed.
Responding to a question about bids and delivering on spending, Dr Mortlock gave assurances about a focus on capacity building and investing in people, and concluded with a reminder that the UK has some of the world’s best universities, scientists and infrastructure to deliver change.
Exploring UK wide genome sequencing for brain tumour patients
Professor Kathreena Kurian, Professor of Neuropathology and Head of the University of Bristol Brain Tumour Research Group, gave a presentation on the route to 100% uptake of whole genome sequencing (WGS) to UK brain tumour patients, and the improved tissue storage resources and protocols needed to achieve this.
Attendees questioned the availability of accessing WGS, turnaround times, disparities in sample freezing and lack of sufficient data.
Prof Kurian acknowledged very few patients currently access whole genome sequencing, even though every adult in England diagnosed with a brain tumour is eligible for this testing. WGS allows brain tumour patients to know the DNA within their tumour and can enable more accurate diagnoses and reveal mutations that could guide personalised treatment plans.
Prof Kurian
Prof Kurian agreed that equity of testing remains a significant challenge, although the number of centres requesting WGS has increased. While 88% of centres have access to WGS, only 15% are offering it, meaning there is still a postcode lottery in accessing centres providing this.
Concluding her presentation, Prof Kurian shared how researchers are using WGS to develop AI tools and contributing to more innovation. She encouraged MPs to urge NHS England to prioritise access, digital results and inform patients of what they’re eligible for through the ‘tissue charter’.
Responding to the Prime Minister’s plans
Dr Karen Noble, our Director of Research and Policy, provided an update about brain tumour campaigner Archie Goodburn’s recent meeting with Prime Minister Andy Burnham and the Health and Social Care Secretary, Yvette Cooper, in Downing Street.
She emphasised how this landmark meeting marked the start of a renewed opportunity for Government to place research at the heart of transforming outcomes for brain tumour patients. She also welcomes the steps set out by the Prime Minister to ensure brain tumour patients get a faster route from research to treatment and his commitment to make the UK a better place to run clinical trials in the UK, giving patients more opportunities to access promising new treatments.
The meeting concluded with optimism from Dr Scott Arthur MP as he reflected on significant progress made during the past two years including strengthening the APPG to drive change, shaping the Rare Cancers Bill and Archie Goodburn’s influence which resulted in commitments from the Prime Minister.
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