Today we’re launching our collaborative report: Barriers to participation in research: the experience of people with brain tumours.
This vital piece of work explores the many obstacles preventing people affected by brain tumours from taking part in research – and outlines what must change.
What We Know
Brain tumours are the biggest cancer killer of children and adults under 40. Yet, brain tumour clinical trials consistently have the lowest recruitment levels of all cancer types in the UK. That’s not because people don’t want to participate, but because the system often makes it impossible.
This is one of the reasons why progress towards better, kinder treatments remains painfully slow. It’s only through research at every stage of the pipeline – from the laboratory to clinical trials – that we’ll see the development of new therapies to improve survival, quality of life, and long-term outcomes for those affected. But research can only drive progress if people are supported and empowered to take part.
What our report found
In developing this report, we spoke with people affected by brain tumours, clinicians, researchers, and policy experts. Key findings were based on our conversations with the brain tumour community:
- Communication – Many patients are not told about research opportunities or are presented with inaccessible information at a time of huge distress
- Geography – Access to trials and research projects is a postcode lottery, with large centres offering more trials than smaller regional hospitals
- Culture – Research is too often seen as an ‘add-on’ within NHS services, rather than a core part of care
- Funding – Chronic underinvestment continues to limit the number of trials, their infrastructure, and the workforce needed to run them.
“I don’t remember having any conversation about whether I would be willing to donate tissue or not.” – Focus group participant
The human impact
Only 12% of brain tumour patients who responded to our Improving Brain Tumour Care Survey said they had taken part in a clinical trial. And less than half recalled ever being told about research opportunities.
This means many people are being denied the opportunity to contribute to – and potentially benefit from – the research that could transform care. As one person explained: “We’d have said yes [to tissue donation], but it wasn’t discussed with us at any stage.”
A way forward
Our six practical recommendations:
- Develop a centralised database of current brain tumour research opportunities
- Tackle regional inequalities so that where you live does not affect your ability to take part
- Simplify information and consent materials to make it accessible to patients with cognitive or visual difficulties
- Standardise brain tumour tissue collection, preservation and storage for research
- Invest in the research workforce and long-term funding to support more brain tumour studies
- Recognise research into brain tumours as a critical clinical priority.
Maintaining momentum
This report adds to a growing evidence base developed by the APPG on Brain Tumours, the Tessa Jowell Brain Cancer Mission, Brain Tumour Research, and all those who have called for a radical rethink of how research into brain tumours is prioritised in the UK.
By exposing the barriers that still exist, we hope this report strengthens calls for a National Brain Tumour Strategy – with a clear commitment to improving research access to accelerate the development of new treatments.
We’re incredibly grateful to everyone who shared their experiences to shape this report. As always, we’ll continue to campaign – in partnership with our community and sector allies – until everyone affected by a brain tumour can access the research, care and support they deserve.
Demand action
The brain tumour community has told us that they are still facing unnecessary and avoidable barriers to taking part in research. It’s time for the Government to act – to invest in infrastructure, prioritise research in policy, and ensure brain tumours are no longer left behind.
That’s why we’re calling for the development of a National Brain Tumour Strategy, with research as a central pillar. And you can help us make that happen.
Email your MP today
Join the 52,000 people who have already shown their support for a National Brain Tumour Strategy by contacting your local MP. It only takes a few minutes using our simple tool:
If you’d like to discuss our recommendations or support this work further, please get in touch with our Policy & Campaigns team at: policy@thebraintumourcharity.org.