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The impact of your involvement

With the input you feed into our work we do here at The Charity, and into the wider community, we have been able to see tremendous positive change. Below you can read about some of our internal projects that you have helped shape.

Members of our Involvement Network, Involvement Champion and Young Ambassador cohorts took part in an interactive focus group aiming to collate creative ideas based on personal experience for the 2023 Winter Appeal, The Gift of Time. Through this focus group, the Individual Giving team were able to carefully consider what the community value most when they have time to spend with their loved ones.

Our Events Team have developed a new series of trekking events called ‘Climb for Cures’ with the help of our Involvement Network and Involvement Champions. Our volunteers were able to feedback what they would like to see incorporated into our upcoming trek events to help with fundraising, and better support the individuals taking part. You can find out about our first part of the Climb for Cures challenge (The Yorkshire Three Peaks Trek) here.

To better support our community, we wanted to develop a free counselling service that was accessible to anyone affected by a brain tumour diagnosis. As part of this process, our Involvement Network and Champions helped in designing an initial survey to understand our communities needs, and gave us feedback on the pilot proposal for this service. With this insightful feedback, we were able to launch our counselling service in 2022, and have since provided over 4,800 sessions.

In 2023 the Policy and Campaigns team launched a new project focusing on the barriers individuals with a brain tumour face when participating in research.

Through our Improving Brain Tumour Care Survey data we were able to see that only 12% of people who answered the surveys had participated in clinical trials. We are aware that for many, there are various obstacles to overcome before being able to participate in research. The aim of this project is to dive deeper into these issues to understand what the current barriers are for people with brain tumours who would like to participate in research, and find areas of good practice that could be replicated to improve other’s experience.

Our advisory group who helped shape this project, is made up of Involvement volunteers who were a valued source of advice, feedback and reflection to ensure the team are able to deliver the project in a way that is useful to the community. The policy team are now in the process of interviewing the community about their experience, in addition to speaking with research nurses to understand the barriers to research from their perspective.

if you are interested in the work our Policy and Campaigns team do, you can find out more here.

Experts through experience

How to volunteer for research studies

There are many ways you can get involved with research studies. The most frequent opportunities to arise are virtual focus groups and surveys. These are often requests from researchers who are applying for charity grants. Researchers who run focus groups are looking for your input on the design, aims, purpose and potential outcomes of their research. Research surveys can involve your active participation in a study, or a request to review a lay summary as part of a research application. Additionally, Involvement volunteers have previously had the opportunity to attend conferences/ workshops and take part in panel discussions. If you are interested in playing an active role contributing towards brain tumour research, and want to know more on how to volunteer for research studies, you can do so by joining our Involvement Network or contacting our involvement team (involvement@thebraintumourcharity.org).

Your experience of living with a brain tumour or caring for a loved one provides an essential perspective for 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 which should never be underestimated.

Reviewing a lay summary

A lay summary is a short summary of a study or clinical trial to help explain its detail to people who do not have a medical background. As a reader, you should be able to follow the summary confidently without any hesitation or confusion about the proposal. If you would like to get involved with our opportunities to review lay summaries, below are some key points to consider when you are giving feedback:

  • Is the research relevant and important to patients and the public?
  • Are the right outcomes being measured?
  • Can you understand the summary the first time you read it?
  • Is the summary clear and written in plain English? 
  • Does it read/flow well?
  • Have technical terms been kept to a minimum or been explained well?
  • Are PPI (patient and public involvement) plans mentioned? If not, is there an explanation for this?

You can contact the Involvement team should you need any further guidance on this, and a member of the team will be more than happy to help.

Who can contribute

 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.
  • Share with researchers your experiences to enable developments in research which could benefit the brain tumour community.
  • Be honest with us about your experiences when contributing to focus groups and surveys.

“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.”

“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.

Apply now

To apply to be part of the Involvement Network,  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.