OurBrainBank's Patient Power Helps Empower People With Cancer
OurBrainBank is a non-profit launched in London this week, to support individuals with glioblastoma multiforme, an aggressive brain cancer
Patient-led, the app seeks to empower patients and improve treatment
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The miracles of modern medicine are truly extraordinary, but that doesn’t mean being a patient has become a radically different experience. They are still seen as the disempowered, the weak, the ones who things are done to, for which they should be truly grateful. Is it any wonder that so many people with serious illness then have to struggle with depression and anxiety?
OurBrainBank, a non-profit which was launched in London this week, is an innovative, patient-led movement focused is the brain tumour glioblastoma multiforme. The aim is to move it from terminal to treatable, powered by the patients who have been diagnosed with this disease.
Transplanted British communications expert Jessica Morris was diagnosed with GBM soon after she had a fit while out walking in upstate New York at the beginning of 2016. Warned by her doctor not to Google glioblastoma, she vowed instead to not only stay alive, but to, as she has said turn her anger and terror into something that could help her and others in the same boat.
OurBrainBank was her creation, a free app that patients or caregivers use to track symptoms, share date with clinicians, and donate data to medical research.
GBM is the tumour that killed Tessa Jowell. At the OurBrainBank launch in the offices of Clear Channel (which donated huge advertising hoardings across London for the charity) Jowell’s daughter Jess Mills spoke about her mother’s experience of cancer, and how she had linked up with Jessica Morris. A more recent patient is Jana Bennett, formerly a senior BBC executive, who also spoke of the fear of this particularly difficult to understand and predict cancer.
While raising money is part of the charity’s remit, it is focused on helping patients take a greater, empowering part in their own treatment. As Jessica Morris has said “My idea was to kill two birds with one stone. Capture patient symptoms digitally, enabling people like me to feel more in control of our disease, while simultaneously donating our data to medical research.”