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Influencing research policy: Brain Tumour Research's journey so far

Earlier this year, we blogged about how a campaign led by the charity Brain Tumour Research resulted in the Government acknowledging that more needs to be done for brain tumour patients and their families. Back in April, the then Life Sciences Minister, George Freeman MP, announced the establishment of a Task & Finish Working Group into brain tumour research.

A historic day

The inaugural meeting of the Government’s Task & Finish Working Group took place on Tuesday 18 October 2016. This was a historic day for Brain Tumour Research. We had unified the voice of a community that had been failed by successive governments. Our ‘Invest in a Cure’ manifesto, Maria Lester’s e-petition, the resulting House of Commons Petitions Committee inquiry and the subsequent debate in Parliament had led to this day.

We were delighted that some of the issues we have been championing for many years featured prominently in the Working Group's discussions. For example, the need to establish specialist brain tumour research centres, the banking of tissue samples and drug development.

The government's response

Since our last blog in May, the Government responded to the Petitions Committee report: they agreed that the current funding for brain tumour research was not enough and established the Working Group.

Nevertheless, we were disappointed that, in their response, the Government did not acknowledge all of the issues surrounding brain tumour research. The Government spoke about cancer in general without recognising the complexities of brain tumours, which do not always benefit from general cancer research.

The Government had little substance on matters such as the challenges faced by young brain tumour research scientists and the importance of taking into account the number of life years lost to a disease when determining research priorities. These are issues we plan to discuss in subsequent meetings of the Task and Finish Working Group.

A milestone on our journey

The Working Group is notable for several reasons. It provides an invaluable opportunity for a wide range of brain tumour stakeholders, such as AMRC member charities, researchers, medical practitioners and the government to cooperate to find solutions for brain tumour patients.

The start of the Working Group also marks an interesting point in our campaign journey. Until now, it has been a case of more traditional ‘political’ lobbying led by ourselves and our supporters, targeting the general public and politicians. From this point onwards, we are working with different stakeholders to advance brain tumour research policy.

Collaborating with the AMRC and its members on matters such as drug repurposing has already given us some of the skills that will help us as we engage with the Task & Finish Working Group - we’d be delighted to hear any thoughts or advice on how to best influence research policy via the Working Group.

Looking ahead

Two further Working Group meetings are scheduled for 2017, culminating in a report to the Secretary of State for Health. We look forward to the opportunity to collaborate with other cancer charities, listen to recommendations from clinicians and work with civil servants to help formulate new policies which can lead to better outcomes for brain tumour patients. Hopefully we will be able to blog updates to let fellow AMRC members know about our progress, so please look out for these!

About Brain Tumour Research…

Brain Tumour Research funds four dedicated brain tumour research Centres of Excellence and is striving to establish three more. We are challenging the Government to increase the national investment in brain tumour research to £30m - £35m each year, the same level of investment other cancers, such as breast and leukaemia, receive. For further information please contact Nick Perkins at Brain Tumour Research on 01908 867200 or nick@braintumourresearch.org