OurBrainBank: People-powered, tech-enabled start-up tackling brain cancer launches in UK
An ambitious new approach to tackling one of the most aggressive, complex and deadly forms of cancer, glioblastoma, launches today in the UK.
OurBrainBank is an innovative, patient-led movement designed to move glioblastoma from terminal to treatable, powered by patients.
OurBrainBank was founded by Jessica Morris, a British-born communications strategist and campaigner living with glioblastoma since January 2016, working with her neuro-oncologist Dr Fabio Iwamoto, Deputy Director of Neuro-Oncology at Columbia University, and Bruce Hellman, CEO of uMotif. Jessica was the founding chair of the Sheila McKechnie Foundation and now lives in New York.
This app has the potential to help us understand glioblastoma patients’ needs and experiences in a much more sophisticated way than we are currently able to. I hope that OurBrainBank can give us insights which ultimately enable us to improve the care given to patients.
Following a successful launch in the US in 2018, where it has been presented and published at the Society of Neuro-Oncology and published online by the American Society of Clinical Oncology, OurBrainBank is now expanding to the UK in response to patient demand.
OurBrainBank’s key tool is a free, certified app that enables patients and carers to manage their disease by tracking their symptoms, test their neurological functions, and keep on top of their treatment schedules. Users can choose to donate their symptom data to medical researchers. The charity is working in partnership with researchers from the University of Leeds.
Patients and carers can download the OurBrainBank app today from the App Store or Google Play, and register using the code OBBUK. Links can be found at OurBrainBank.org/UK.
OurBrainBank was launched in the UK via digital poster sites in London generously donated free of charge by Clear Channel and created pro bono by communications agency FleishmanHillard (visuals available on request).
There are on average 11,725 new cases of brain tumours every year in the UK (source: Cancer Research UK, 2014-2016 average). Glioblastomas are the most common high grade (cancerous) primary brain tumour in adults. A glioblastoma is the fastest growing form of glioma brain tumour and is extremely difficult to treat, with just 5% of patients surviving more than five years. (source: The Brain Tumour Charity).
Jessica Morris, founder and Chair of OurBrainBank, commented: “We are building a people-powered movement where we share our experience of living with this disease to manage our health and make real progress with research. Focusing research efforts on the hardest of cancers offers the most cost effective way of making progress with all cancers.”
OurBrainBank is working with Dr Florien Boele, from the University of Leeds Institute of Medical Research and Leeds Institute of Health Sciences.
Dr Florien Boele said: “This app has the potential to help us understand glioblastoma patients’ needs and experiences in a much more sophisticated way than we are currently able to. I hope that OurBrainBank can give us insights which ultimately enable us to improve the care given to patients.”
Jess Mills, Co-founder and Special Advisor at the Tessa Jowell Brain Cancer Mission, said: “OurBrainBank enables people to collect data that can help give them agency over their disease, connect in a different way with their own clinicians and other patients and provide insights for research. We at the Tessa Jowell Brain Cancer Mission welcome the excellence OurBrainBank brings to the growing members of organisations passionate about tackling brain tumours. I know my mother would be especially pleased to see the impact that her fellow campaigner (and Brit) Jessica Morris is bringing to our shared mission.”
OurBrainBank has engaged a dynamic community of people affected by glioblastoma throughout the world via social media, its e-newsletter, YouTube channel, live video chats, and extensive media appearances. Its private Facebook group has 700+ members and is growing daily.
The OurBrainBank app is made by British company uMotif, and has been proven to work through large-scale patient studies, virtual trials and clinical Randomized Controlled Trials in more than 25 clinical conditions. The content of the app reflects the findings from OurBrainBank’s research amongst people living with glioblastoma.
The uMotif technology ensures patients’ privacy and has been robustly tested by over 20,000 patients with conditions ranging from Arthritis to Parkinson’s. All data collected will be de-identified and made available to any qualified glioblastoma researcher worldwide, subject to the approval of OurBrainBank's Data Access Committee, ensuring that participants’ privacy is maintained.
Bruce Hellman, CEO and Co-Founder of uMotif commented: “The launch of OurBrainBank in the UK is incredibly exciting as it is an example of the new future of people-centred research. Research of the future will use technology to design trials around the needs of the people involved, widening access and helping researchers make important new breakthroughs. OurBrainBank has proven this model in the US by working with people with GBM, their doctors and researchers.”
