In this paper was recommendations to roll out 5-ALA nationwide, implementation of the Cambridge Model and ways to bring diagnosis times down.
Tessa Jowell Brain Cancer Mission
In February 2018, The Charity helped arrange a top-level summit in London following Tessa Jowell's call for action to improve brain tumour survival for everyone affected by the disease, following her own glioblastoma diagnosis.
The meeting was chaired jointly by health minister Lord O'Shaughnessy, who oversees government life sciences policy. The roundtable discussions focussed on four key areas including clinical trials, research, funding, and patient access and care.
Amongst the leading brain tumour experts contributing to the event were Professor Richard Gilbertson, Director of the Cambridge Cancer Centre and chair of our Scientific Advisory Board; Professor Stefan Pfister from the German Cancer Research Centre; Professor Susan Short from the University of Leeds; Dr Steven Pollard from Edinburgh Cancer Research Centre and Dr Colin Watts from the University of Cambridge.
The Brain Tumour Charity led the patient experience working paper which was then presented by our CEO, Sarah Lindsell.
The Roundtable set out 19 recommendations of the four key areas discussed in February in which to make best use of brain tumour funding, accelerate research, foster collaboration, increase the ease of data sharing, and improve patient access and treatment.
Some of the recommendations are set out below:
- Create a global bio-bank and tissue bank for research purposes
- Develop a platform for innovative and adaptive multi-centre early and late stage clinical trials; including the exploration of using the GBM AGILE protocol
- Put in place rigorous systems to ensure effective data sharing across the UK Government and NHS, and where appropriate, internationally; with patient-led advocacy to support legitimate, sensible and legal data sharing
- Provide protocols and ethical frameworks for access to experimental medicines which are truly patient-centric
- Implement new models of patient care, such as the Cambridge Model, and ensure appropriate measurement of patient outcomes/satisfaction
- Work with pharma to identify a system to re-purpose drugs and expedite trials development through partnerships
- Develop an international data sharing protocol and registry
- Continue to develop and train a world-class clinical and research base for brain tumours, both in the UK and internationally
Moving forwards the Tessa Jowell Brain Cancer Mission is made up of a steering committee and four working groups focusing on research, clinical trials, training and patient experience. We sit on the steering committee and will continue to lead on the Patient Experience Working Group alongside Tessa Jowell's daughter Jess Mills. The group is made up mainly of those personally affected and leading clinicians.
It will focus on six key areas:
- Patient-led advocacy to support the development of data sharing protocols and a registry
- Improved access to experimental medicines
- Collaboration with pharma in expediting drug repurposing and trial development
- Development of a clear timeline to reduce diagnosis
- Implementation of new models of patient care, such as the Cambridge Model, and appropriate measurement of patient outcomes/satisfaction
- National roll out of the 'pink drink' and other proven tools