On Tuesday we attended the Task and Finish Group on brain tumour research. As experts in the brain tumour research landscape, we were invited to be part of this group following the petitions committee debate on the funding of research which occurred in response to a petition started by Maria Lester in memory of her brother Stephen Realf who sadly died from a brain tumour.
The Task and Finish group met at the Department of Health (DH) and convened a number of experts in the field of research, including Professor David Walker who is the clinical lead on our HeadSmart campaign, Dr Louise Wood - Director of Science, Research & Evidence at DH, Dr Karen Kennedy - Director of the National Cancer Research Institute (NCRI) and Dr Paul Mulholland - Medical Oncologist at UCL.
The group, chaired by Professor Chris Whitty, Chief Scientific Advisor, DH, discussed the current barriers to research. We, along with the majority of those present reflected that whilst greater funding for research is useful, there are a number of other barriers to sustainable and innovative research, which if need to be overcome first, as without these being addressed greater funding would have no effect.
Data and biobanking - as we identified in our research strategy and reflected in our submission to the group, a lack of good quality tissue samples and associated data are an ongoing issue. There is a need to address the infrastructure around these.
Workforce – currently there is limited collaboration between different types of researchers, scientific and clinical, and within the community more broadly. Greater collaboration and information sharing could have a significant impact on the speed of advancement. Additionally, we and a number of others mentioned the need for sub-specialisation within clinical practice, in particular that there should be brain tumour specific training for medical oncologists.
The legislative and regulatory environment – there are currently a number of issues around the way in which research is regulated that could be streamlined or otherwise adapted to accelerate the process.
The task and finish group will now, having set some priorities around the above themes, work towards addressing these issues.
We will continue to work in collaboration with others and through this group to ensure that these changes happen and we will continue to fund high quality, sustainable research, in the UK and worldwide, that will help us find a cure.
The group meets again in January 2017.