Every year, we invest millions of pounds into research to improve the lives of those affected by brain tumours. Last year alone, we spent over £7m on research. To ensure we’re funding the best research possible, we rely on experts to assess the quality of the research. But, importantly, also the practicality and the real impact it can have on people’s lives.
In September 2024, we held the first meeting of our newly formed Lay Advisory Board. The panel consists of ten members of the community, each bringing lived experience of brain tumours. This includes people personally affected by both childhood and adult brain tumours, spanning a range of tumour types and grades. Their insight is invaluable as we continue to shape a research strategy driven by the needs and experiences of the brain tumour community
The importance of Patient and Public Involvement in Research
At the forefront of our work is a commitment to putting the community first. By involving those with lived experience, we aim to ensure that research projects we fund align with the real-world needs and priorities of those personally affected. Meaningful Patient and Public Involvement is essential to shape research and address the unmet needs of those affected by brain tumours.
For many years, we had three Lay Members on our Scientific Advisory Board. However, we recognised that their insights were so valuable that we needed to establish a new, independent Lay Advisory Board. At The Charity, we are continuously learning and improving our funding processes to ensure our research maintains high scientific quality and benefits the brain tumour community.
We know that the best research is a collaboration between researchers and experts by experience. Our independent Lay Advisory Board is a new and exciting leap forward for The Charity which I am proud to have been a part of. It will ensure the patient voice is heard at all stages of the research process and will feed directly into our grant funding decisions, whilst still allowing us to maintain the highest standards of scientific rigour, transparency, and fairness to all.
Dr Denise Robertson, Research Grants Manager at The Brain Tumour Charity
How the Lay Advisory Board Works
Our Lay Advisory Board works alongside our Scientific Advisory Boards to evaluate research proposals and inform our funding decisions. While the Scientific Advisory Board provides an expert review of the science and methods of proposals, the Lay Advisory Board offers a complementary perspective that is rooted in lived experience This collaboration creates a balanced review process that considers both scientific and community perspectives. By working together, we can ensure that the research we fund moves us nearer to our goal of helping those affected by brain tumours live longer and better lives.
When community members with lived experience have a seat at the table in medical research funding decisions, we ensure that research is not just innovative, but also meaningful and impactful – after all, A Cure Can't Wait. Our voices bring urgency, insight, and a deep understanding of what truly matters to patients and families affected by brain tumours.
Neil Munn, Lay Advisory Board member
Our Involvement Team and Research Involvement Network
Behind the scenes, our dedicated Involvement Team coordinates a Research Involvement Network that supports researchers to strengthen their proposals before submission. This network is an advisory service, connecting researchers with individuals with lived experience who can share their insights and help shape projects to better meet the needs of the community.
By offering a direct connection to the brain tumour community, we’re helping researchers design studies that are more likely to succeed and have a meaningful impact. Importantly, this also empowers people in the brain tumour community to have their voices heard and to contribute directly to the future of research.
At The Brain Tumour Charity, our approach to PPIE is guided by the principle “nothing about us, without us”. Without involvement, we would miss critical perspectives and risk funding projects that don’t fully meet the needs of those we aim to support. Our Lay Advisory Board gives an invaluable opportunity for people with lived experience to contribute to our research programme.
Rachel Roberts, Involvement Manager at The Brain Tumour Charity
Get Involved
Establishing the Lay Advisory Board is a significant step in making research more inclusive, collaborative, and impactful. Importantly, it embodies our key value of putting the community first. We are excited to see how this will further strengthen our goal to accelerate a cure for all those affected by brain tumours.
If you’re passionate about shaping the future of our research, we encourage you to join our Research Involvement Network. At The Charity, we promise to continue to put the community at the centre of everything we do.