Launched BRIAN, our pioneering databank and app, to harness the power of patient data. Since its public launch in late 2019, we have had over 2,000 users (and rising) using the app to help manage their experience, contribute their data towards a cure and use insights from millions of NHS and Public Health England records
Established our Research Involvement Network (RIN), a collaboration between researchers and patients. Since 2015, its 211 members have been involved across 170 research projects including all of the research applications for our funding
70% of patients living with a brain tumour contributing to research (baseline: 24% in 2016)
of patients in the Patient Guide Survey have discussed clinical trials, been offered biobanking, or had biomarker testing
However, it has been difficult to track all patient research activities
By combining national healthcare records with user-input data, BRIAN forms a unique, interactive tool that offers support and information for those affected while providing researchers with critical data.
This allows researchers to better understand people’s quality of life when living with a brain tumour diagnosis. They can use this collective experience of patients, together with national healthcare records, to drive forward research into brain tumours and accelerate progress towards a cure.
Professor Keyoumars Ashkan, Professor of Neurosurgery, King’s College Hospital, London
Mike’s daughter, Elsie, is two years old and was diagnosed with ependymoma
Mike’s daughter, Elsie, is two years old. She was diagnosed with an ependymoma last May.
“We signed up to BRIAN so we could organise Elsie’s treatment and her medication regime, which is complicated. Elsie’s diagnosis has been life changing. She’s now six months into 18 months of chemotherapy and we’ve had to change our working patterns to accommodate her treatment and all the challenges this brings. The process is emotionally exhausting but we draw strength from Elsie who battles through each hurdle with a smile, a giggle and a cuddle.
BRIAN has been useful to keep a check on Elsie’s side-effects from treatment and we’ve also been completing the quality of life questionnaires. Keeping a record of appointments and treatments has reminded us of her progress so far. It helps to keep track of the burden of treatment and puts things into perspective when things are difficult.
We also wanted to share Elsie’s information so researchers can understand more about what’s important to families. BRIAN is a great tool to track your child’s treatment journey and it’s good to know that the information will be put to good use supporting other families and improving quality of life of other children with brain tumours going through treatment.”
Molly, aged 18 when first diagnosed with a grade 1 pilocytic astrocytoma, found out about BRIAN via the Young Adults’ Facebook Page
Molly was 18 when she was diagnosed with a grade 1 polycycitic astrocytoma. She found out about BRIAN from our young adults’ Facebook page.
“I felt using BRIAN was a good way to keep track of things, as I’ve suffered with memory issues since starting treatment. I’ve entered medication, symptoms, side-effects and mood tracking information. This has been really useful for me as I’ve just had to fill in a Personal Independence Payment reassessment form and found it helpful to look back, as my memory isn’t great. It really helps people with memory loss (most people I know with a brain tumour experience this) to keep all of their information in one usable and trackable place.
I hope that I can continue to use BRIAN to store and track how I’ve been doing and that it will help people in the future by showing how brain tumours affect individuals, and finding what most people struggle with, so accessing specific help will be easier.
I’m now keen to start using the feature where my healthcare professionals can access my information to see how I’m doing.”
Accessing the right data, at the right time, has been a major barrier to brain tumour research and clinical advances. Too often, research is out-of-date before it even begins and significant time and cost is wasted securing access to the data. BRIAN is our innovative tech solution that addresses this complex challenge and puts patients in the driving seat of their own care.
By combining national healthcare records with user-input data, BRIAN forms a unique, interactive tool that offers support and information for those affected while providing researchers with critical data. For the first time, our community can find the most critical data for accelerating a cure. They can track appointments, medications, side-effects and their quality of life, as well as opt to share their data with their healthcare team via BRIAN, presenting new, digital opportunities to enhance clinical care.
It has taken persistence and passion to launch this pioneering project, but early feedback is very positive and we will pursue its potential to transform outcomes in the future. We have demonstrated that charities can successfully connect motivated patient groups, determined to use their data for a cure, with a resource constrained NHS that is, however, willing to share data in the public interest. We are already having conversations with other charities to help our breakthrough improve outcomes in their disease areas.
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