The amount of money spent on research into brain tumours has been much discussed in recent months, More than 100,000 people signed a petition back in February calling on the government to channel more funding into this area, prompting MPs to debate the subject in the House of Commons last April.
But is it just about money? As Senior Policy and Public Affairs Manager for The Brain Tumour Charity, I’d argue there are more profound and important issues hampering the acceleration of research in this area.
We can spend all the money in the world on research but unless we fund high-quality projects which will actually make a difference, it is likely to be of no benefit to those affected by brain tumours. There are a number of truly exceptional researchers in this field but there are also those whose projects will do little to move the cause forward. There is no point in throwing money at them. You can shout as loudly as you like about their work but ultimately you will be wasting your fundraisers’ money.
The Brain Tumour Charity has committed to funding only high-quality, rigorously peer-reviewed research. And we fund it all, from basic lab-based research through to clinical trials, as well as work which aims to enhance quality of life.
It is vital that all funders – charities and government alike – commit to spending money only on high quality research projects.
One way to improve quality is by mentoring upcoming researchers. As a charity we are looking at ways to do this but in the absence of sufficient leading researchers to mentor upcoming talent, we may lose the next generation to the US or other European countries. While this may not hamper the cause of research into brain tumours overall – good research done anywhere can be translated to the UK situation – it does impact on the standing of UK science.
Like many involved in charity policy, I believe Brexit is affecting the UK research workforce and will continue to do so. I am aware of at least four planned appointments in brain tumours that have failed to materialise in part or wholly because of Brexit. The government must do whatever it can to maintain the appeal of the UK as an environment for scientific and clinical research.
It will take time to attract the top talent, either from abroad or from fields other than research into brain tumours, but this is an imperative first step.
Another potential barrier is a lack of research resources such as tissue collections, relevant cell lines and models. In the paediatric brain tumour community, collaboration around resources is well-established but the adult brain tumour research mind-set is still very much a competitive one. That needs to change.
We must invest in a tissue bank that is available for all researchers to use, not one that is held by individuals who restrict access. Any researcher using the tissue bank should be required to share the data they glean from work involving its samples. In that way we can maximise the impact of every individual and family who makes the decision to help others by donating a brain tumour tissue sample.
Finally, more must be done in practice to ‘create a research environment’, as promised by the NHS mandate. Currently some centres which treat brain tumours do not allow their clinical staff to conduct research: those centres are less likely to be aware of clinical trials and promote them to patients. Even in those centres which do conduct research, time for clinical staff to devote to it is limited.
All of these issues and more are at the heart of The Brain Tumour Charity’s work with government, the NHS and regulators, as well as with the research community. Along with my colleagues, I am determined to ensure these issues are addressed. Simply throwing money at them is not the answer.
Your voice matters
By campaigning with The Brain Tumour Charity, you can help ensure the issues which affect the brain tumour community remain a political priority.