Brain tumours are the biggest cancer killer of children and adults under 40, and 102,000 children and adults are estimated to be living with a brain tumour in the UK. Recently the disease was brought to the attention of the public by the decision of former cabinet minister Tessa Jowell to share her brain tumour diagnosis in September last year.
In January, Tessa spoke on the BBC and in the House of Lords about the bleak prognosis for those diagnosed with a high-grade brain tumour and the urgent need for more effective treatments. Watched and heard by millions, one of the issues she highlighted was the importance of enabling people affected by a brain tumour globally to share information about their own treatment and experience, as a way of improving understanding of the disease.
People living with a brain tumour often go online for reassurance, but quickly find themselves overwhelmed by a huge amount of material that is difficult to understand. It is hard for them and their loved ones to make choices that balance risk, quality of life and outcome. Many explore how they can use their situation to help others, particularly if they are facing the end of their own life. It is then that people often want to share their medical data, to help people in the future, and are frustrated to find there is currently no way for them to pro-actively do it. Meanwhile, researchers and clinicians struggle to get the data they need, which means projects take longer and cost more than necessary, or worse still don’t even get started.
The Brain Tumour Charity’s project BRIAN (the Brain tumouR Information and Analysis Network), will make innovative use of technology to make a permanent, sustainable, difference in the fight to defeat brain tumours.
The Charity is working hand-in-hand with people living with a brain tumour and their carers to build BRIAN – a trusted, collaborative, online platform designed to help defeat brain tumours. BRIAN will allow those affected by a brain tumour to share their medical records, upload information about their treatments and quality of life, and access anonymised information on others’ experiences.
People will interact with BRIAN using their PC, tablet or smartphone, via a friendly web app, but the real power of BRIAN comes from the data warehouse that sits behind the scenes, joining patients, scientists and clinicians in the battle to defeat brain tumours.
Initially BRIAN will be available to patients in England and linked to a wide range of healthcare data sources. Over time The Charity plans to collaborate across the UK and globally to create the best brain tumour research resource in the world.
BRIAN, is a game-changing project designed to give people living with a brain tumour, and their carers, the ability to make informed choices and have the best possible quality of life. It will also give them the chance to improve life for people in the future, whilst empowering them to best manage their day to day treatment and care. BRIAN will reduce research costs, accelerate the path to results, enable more research to be conducted, and improve research validity. Clinicians’ standards will be raised and treatment should become more consistent across the UK. Ultimately, BRIAN should help to identify better treatments.
Shortly before her death, Tessa Jowell herself signed up to BRIAN, demonstrating her commitment to action, not simply words.
The Charity is honoured to say that BRIAN has been shortlisted for the 2018 WCIT Charity IT Award.