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How a patient and doctors worked together to form innovative non-profit OurBrainBank

After being diagnosed with glioblastoma (GBM) in January 2016, Jessica Morris co-created the non-profit OurBrainBank with the mission 'to move glioblastoma from terminal to treatable, powered by patients'. We spoke to her about how and why she embarked on the project and the impacts  it is already having.

Morris is presenting her story during a session titled PATIENT’S AND DOCTORS JOINT STORY: Doctor and Patient working together to form OurBrainBank at Partnerships in Clinical Trials Europe in Barcelona on 28 November 2018.

 

How was OurBrainBank first created? What did you hope to achieve?

When I was diagnosed with glioblastoma, a terminal brain cancer, in January 2016, I was struck by how little account was taken of my symptoms, from my perspective. So-called 'objective' measures, including MRIs and blood work, were favored over 'subjective' measures, such as my own sense of symptoms. I was also shocked to discover that only 5% of applications for research funding into glioblastoma are successful. Funders are naturally conservative, making funding into a rare, aggressive, highly heterogeneous condition challenging.

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. The mission of OurBrainBank was born: to move glioblastoma from terminal to treatable, powered by patients.

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What impact has the project had both for GMB patients and clinicians/doctors working on treatment?

We're making an impact through media, with OpEds in the New York Times and The Guardian, a plethora of references in medical media, TV appearances including the Dr Oz show, and a range of podcasts, notably Sarah Brown's 'Better Angels'.

We went live with our leading tool, a free app for people affected by glioblastoma, in March this year. It was designed by uMotif with content sourced from a survey we undertook with 160 people with glioblastoma. It's easy to use, helps you keep track of how you're feeling, allows you to share your data with your clinical team, and enables you to test your neurological abilities with some cool games. We've recently added a Facebook group with regular video meetings, to foster patient connections and create a sense of community. These are proving really popular.

Since March, a number of leading clinicians have joined our advisory board, and the Society of Neuro-Oncology has invited us to exhibit our work at their annual conference, which we take as a great signal of encouragement.

Why do you think it is so important to involve patients in drug development?

Good design is based on involving those for whom the designs are intended. This is fundamental to all project design. Currently, drug development is subject to regulations which, however well intentioned, downplay the significance of the patient experience, including active and passive symptom monitoring. This creates some extraordinary situations: in my case, my disease has a median life expectancy of 14 months, and no curative treatments - way shorter than the average time it takes to get a new drug from inception through to the completion of a clinical trial. In any case, clinical trials are typically available only for those in the worst stage of their disease, when their bodies are least likely to be able to respond positively.

Those working in healthcare and clinical trials are increasingly looking toward other industries to help solve problems. Do you think the fact you don’t have a scientific background has helped or hindered you in this project?

I'm a natural born campaigner, and a strategic communications consultant who studied history at university. I'm much happier looking at macro trends, like the impact of digital disruption in healthcare, and the move to greater patient-centricity, than the complexity of micro knowledge needed in medicine.

OurBrainBank is borne out of a collaboration between patients like me, leading and enlightened neuro-oncologists, including Dr Alexis Demopoulos who is speaking with me at Partnerships in Clinical Trials, and a uniquely multi-disciplinary team of healthcare marketeers and professionals. This means we have a myriad of perspectives, all centered on answering the key question, which is how can we use the power, and the value, of the lives of people with glioblastoma to turn this disease from terminal to treatable?

See Jessica Morris tell her story at Partnerships in Clinical Trials Europe in Barcelona on 27 - 29 November 2018. Explore the full agenda or register for a pass.

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