"It's really easy to join and there's loads of support if needed – you can do as little or as much as you want."
Deborah has been part of our Research Involvement Network as a volunteer since 2015.
Involvement Network - Research Focus
By getting involved in research you can help ensure that future research programmes meet the needs of those affected by brain tumours. Through ensuring that we hear the views of those affected as well as researchers and clinicians, together we can make sure that research remains relevant and reflects the needs of our community.
Experts through experience
Your experience of living with a brain tumour or caring for a loved one can provide a vital and different perspective to researchers when shaping or evaluating new programmes of research. You don't need to know about research or have an in-depth understanding – you will bring a wealth of information through your experience and the perspective that this will bring – this cannot be underestimated and is extremely valuable.
You will have the opportunity to participate in research in many different ways. These could include:
- Reviewing research applications and feeding back on the importance of this based on your experience.
- Taking part in a panel discussion, where you will be able feed back on your personal experiences to help inform the direction of the project.
- Reviewing lay summaries, which is a short summary of a study or clinical trial to help explain its detail to people who do not have a medical background.
- Helping us build links between researchers and those affected by brain tumours.
- Share your experience of being a research Involvement Network Member to encourage others to get involved.
Anyone who has either been diagnosed with a brain tumour or has cared or is caring for someone with a brain tumour.
You don't need a scientific or research background; you are an expert through your experiences and your contribution is invaluable whatever your background.
We ask that you are able to:
- Communicate with others and listen to others views, even when they do not always agree with your own
- Help us develop and improve our Research Network and wider services
- Share with researchers your experiences to enable developments in research which could benefit the brain tumour community.
- Shape the future of brain tumour research
We will provide you with the support that you need to take part and try to accommodate people as much as possible to ensure that we get a wide range of views in everything that we do. Our Support & Information Team are here to answer any questions you may have about the projects that you are asked to take part.
"My daughter was diagnosed with a brain tumour shortly after her third birthday and following lots of help from The Charity, I wanted to give something back.
I didn't have that much experience of research but was told that our experience is the knowledge that researchers need. It gives a vital perspective in shaping and evaluating new programmes of research."
Apply now
To apply to be part of the Involvement Network, with a research focus, please complete the application form below. Once you have submitted this form, you will be contacted by someone from the charity within three working days.
You can also contact us at involvement@thebraintumourcharity.org if you have any questions and we will gladly assist in any way possible.