E-petition debate: Funding for research into brain tumours

There were 10,624 new cases of Brain or other Central Nervous System (CNS) tumours in the UK in 2013.[1] This represented 3% of all cancer cases that year. Around a fifth (19%) of people diagnosed with brain cancer in England and Wales survive their disease for five years or more (2010-11).[2] According to the charity Brain Tumour Research more people under the age of 40 die as a result of a brain tumour than any other cancer.[3]

E-petition 105660 was started by Maria Lester, whose brother Stephen Realf lost his life as a result of a brain tumour. The petition was supported by the charity, Brain Tumour Research who are campaigning for increased funding for brain tumour research. It called on the Government to provide more funding for research into brain tumours and received 120,129 signatures. The petition stated:

Fund more research into brain tumours, the biggest cancer killer of under-40s

Brain tumours kill more children and adults under 40 than any other cancer. One of those young lives lost was my brother Stephen, who was diagnosed at just 19 and died aged 26. More funding for research is urgently needed - read on for some shocking statistics from the charity Brain Tumour Research:

• Unlike most cancers, brain cancer incidence is rising.

• Less than 20% of those diagnosed with brain cancer survive beyond 5 years.

• In 2014, brain tumours received 1.5% (£7.7 million) of the £498 million national spend on research into cancer. At this rate, it could take 100 years to catch up with developments in other diseases.

The charity is calling on the Government and larger cancer charities to raise investment to £30-£35 million a year, and this petition aims to support its campaign.[4]

The Government response to the petition said that brain tumour research received 3.3% of site-specific cancer research funding from the National Cancer Research Institute and reported what factors are taken into account when making research funding decisions:

The Government and charities work closely together in brain tumour research and other fields of cancer research through the National Cancer Research Institute (NCRI). Factors influencing the level of research funding are discussed in Strategic Analysis 2002: An overview of Cancer Research in the UK directly funded by the NCRI Partner Organisations:

There are a number of factors that dictate the level of research funding into a particular issue. These include:

• scientific opportunity – this can be a very important factor. In particular, developments in fundamental research and the introduction of new technologies often stimulate new approaches;

• the burden of disease – the incidence and severity of a type of cancer will influence both researchers and funders;

• researchability – some tumour types are easier to work on than others but can often provide a model system for other cancers, and many researchers are attracted to areas or diseases where there is real evidence or potential for progress;

• fundraising – certain types of cancer may attract more public donations than others; and

• the quality and size of the research workforce – because of the issues listed above some areas attract more high quality researchers than other areas. This will undoubtedly affect the number of quality proposals received by funding bodies.

NCRI partner organisations take these factors into account when making funding decisions. However, the relative importance of each of these in the decision-making process varies for each organisation depending on its corporate aims, culture and procedures.

The NCRI Cancer Research Database includes expenditure on cancer research by NCRI partner organisations. This includes only direct spend on cancer research, or spend which directly supports cancer research. The proportion of cancer research funding directly supporting brain tumour research was 1.5% in 2014. This analysis includes fundamental research (28.8%) and funding relevant to all cancer sites (25.1%). If these elements are excluded, brain tumour research received 3.3% of site-specific cancer research funding. This is a greater proportion than for 40 of the 49 site-specific categories.

The National Institute for Health Research (NIHR) welcomes funding applications for research into any aspect of human health, including brain tumours. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and the NHS, value for money and scientific quality. NIHR funding is not ring-fenced for cancer research or for research on brain tumours or other types of cancer. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

The Government welcomes the commitment by Cancer Research UK to increase spend in research on brain tumours. This will drive further investment by the NIHR. This happens in two ways. Firstly, as scientific breakthroughs are translated into interventions benefitting patients through infrastructure for experimental medicine. Secondly, investment is driven as emerging interventions are investigated in studies and trials through the NIHR Clinical Research Network.[5]

Petitions Committee Inquiry

The Petitions Committee conducted an inquiry into funding for research into brain tumours as a result of the petition, and published its report, Funding for research into brain tumours in March 2016.[6]

The Committee opened a web comment thread and invited members of the public to share their thoughts and personal experiences of brain tumours. The web thread received 1106 posts in just ten days.[7] Following this, some of those that contributed to the web forum took part in a round table discussion with the Committee.

The Committee also heard evidence from charities, researchers and the Director of the National Cancer Research Institute. Transcripts and videos of the oral evidence sessions are available on the Petitions Committee website.

At the time of the publication of the report, the Chair of the Petitions Committee, Helen Jones said that the evidence was clear- something must be done to improve outcomes for patients and remove barriers to research:

"The Petitions Committee’s first report makes clear recommendations to the Government about the lack of funding for research into brain tumours. As part of this inquiry we heard testimonies both from victims of this terrible disease, and from clinical specialists working in the area.

The evidence was clear – something must be done to improve outcomes for patients, and barriers to research must be removed. This report was initiated by the public; it is a vitally important issue and I hope the Government takes our recommendations seriously.”[8]

The Committee looked at the levels of funding for brain tumour research and concluded that it had been seriously underfunded, putting it behind other cancers in terms of improvements in outcomes.[9] They recommended that the Government gives a clear statement about whether it thinks the level of funding for brain tumour research is adequate and if not what the Government will do to ensure funding increases:

In its response to the petition, the Government has not explained clearly whether it believes that current levels of funding for brain tumour research are adequate. The response failed to address the serious concerns raised by the petition: the lack of progress in survival rates for brain tumours; the burden of the disease, particularly the fact that it is responsible for the highest number of life years lost compared with other cancers; and the impact on quality of life for those who do survive. We recommend that the Government gives a clear statement of whether it thinks funding levels are adequate and, if not, what it will do to ensure that funding for brain tumour research increases.

The Petitions Committee report also highlighted other barriers to research into brain tumours which includes difficulty in recruiting PhD students and a lack of coordinated tissue sample collection:

We heard evidence about the barriers that may be preventing increased investment in brain tumour research. Historical funding problems for research into brain tumours and lack of leadership from successive governments in this area appears to have left a gap in the research workforce within the UK; in particular it is increasingly difficult to recruit PhD students and those who complete their PhD often have to change specialisms or work overseas. An absence of co-ordination and awareness has impeded collection of tissue samples, making fundamental research into different tumour types extremely difficult. Coordinated and adequate tissue collection, a quality workforce and ability to get fundamental ‘blue sky’ research applications approved could significantly improve progress for brain tumours. The Government needs to take a leading role in tackling these systemic problems, to unlock the potential for investment in brain tumour research to be increased.[10]

The Committee also recommended a number of measures to increase awareness of brain tumours and improve early diagnosis rates.

The Government response to the report has not yet been published.

[1] Cancer Research UK, Brain, other CNS and intracranial tumours statistics [accessed on 7 April 2016]

[2] Ibid.

[3] Brain Tumour Research, 120 DIFFERENT TYPES… no wonder a brain tumour is notoriously difficult to diagnose [accessed on 15 April 2016]

[4] E-petition 105660 [accessed on 12 April 2016]

[5] E-petition 105660, Government Response [accessed on 12 April 2016]

[6] House of Commons Petitions Committee, Funding for research into brain tumours , First report of Session 2015-16, March 2016

[7] Petitions Committee, Funding for brain tumour research web forum

[8] Petitions Committee, Brain tumour research funding inadequate and not given sufficient priority, 14 March 2016

[9] House of Commons Petitions Committee, Funding for research into brain tumours , First report of Session 2015-16, March 2016 (page 30)

[10] Ibid, para 87