Many people are grieving the untimely death of Tessa Jowell. She was an exceptional person. Tony Blair confirmed the impression she gave to those of us who only knew her from afar: “Tessa had passion, determination and simple human decency in greater measure than any person I have ever known.”
For me, her death is personal for another reason. We found ourselves in the same elite club.
Like Tessa Jowell, I was blindsided by a diagnosis of glioblastoma (GBM) in January 2016. I was walking in the hills in upstate New York (we live in the city) when a strange sensation made me stop. I opened my mouth to explain to my friends and found I couldn’t form any words. I slumped into unconsciousness, having a full-blown seizure.
Two days later I had brain surgery, and the terrible diagnosis came two weeks after that. Now, more than two years later, I am determined to do what I can to improve the outcomes for everyone like me living with this brutal disease. Jowell’s death gives me added impetus in the struggle to turn this monstrous disease around.
After I was diagnosed, I asked my neuro-oncologist why glioblastoma is so deadly; why the terrifying statistics suggested that I had a mere 5% chance of surviving five years. He explained to me that the dreaded figure five also relates to another key statistic: the percentage of successful applications for research funding into GBM. This disease is so complex, so aggressive and so rare, that it is hard to attract substantial research funding.
It is especially gratifying that Jowell’s powerful legacy has already begun to be felt in the form of increased government funding. But she would be the first to agree this is not enough. There is another currency to tap: a goldmine of patient-generated data that is massively under-collected and undervalued. At the heart of every GBM drama, as with any life-threatening disease, is a human being enduring symptoms – some good, many bad – resulting from the cancer and the treatments we take. Yet our relationship as patients with our disease is not consistently recorded or analysed. It can feel as if, from the perspective of the medical system, our experience is not worth understanding.
As an example, I’ve been fortunate enough to be treated in New York with ground-breaking treatments that can be hard to come by in the UK, including electrotherapy and immunotherapy. These cost more than $ 30,000 a month, covered by insurance and the drug company’s compassionate use programme. But how the interaction between these therapies is actually affecting me is not recorded. This reflects a long-standing approach in medicine. The “objective” measures of disease progression, as evidenced by things like the size of my tumour, the results of my MRIs, are prized. The “subjective” measures of my experience – how I feel each day, my personal responses in terms of X or Y – are largely ignored.
Patients are active, wanting to share and swap notes. Desperate to know whether a change in diet, or a cocktail of supplements, or exercise, or mindset, can help them stay alive, they are busy on social media. Amid all this noise, doctors have little advice to give – “Should I adopt the ketogenic diet? Take medical marijuana? Fast twice a week?” – because none of these approaches have been, or could be, subject to the kind of clinical trial a new drug treatment undergoes.
But imagine if we could ask people to log how they’re feeling, and what steps they’re taking to manage their disease, every day. Imagine if we could then aggregate all that data and mine it for insights. Couldn’t we find some clues from patients’ unfiltered perspective that would supplement the clinical trials information?
Dr Ethan Basch, of the Lineberger Comprehensive Cancer Center, University of North Carolina, undertook some fascinating research last year. He found that if you ask someone with cancer to log their symptoms, the act of doing so, coupled with your clinician’s ability to adjust therapies in real time, can lead to an actual improvement in disease outcome. People lived longer.
I’ve channelled my own frustration with my diagnosis into creating OurBrainBank, a non-profit organisation designed to move glioblastoma from terminal to treatable, powered by patients. We recently launched our pilot app in the US. People with GBM can log their symptoms daily and their aggregated data will be available to any qualified GBM researcher worldwide, for free, subject to strict screening. People using the app report feeling more on top of their disease through daily monitoring; better able to make use of their meetings with their clinicians; and more hopeful that by sharing their personal data they can play an active role in making progress.
Tessa Jowell died during May, which happens to be brain tumour awareness month. Our colour is grey. It’s strangely apt. Because what we need to crack GBM is to use our grey cells to think creatively and empathetically – patient and doctor alike.
That’s the kind of approach she espoused. She put it the best: “I hope always my politics are the politics of aspiration, ambition, possibility and the future.”
• Jessica Morris is a strategic communications consultant and the founder and chair of OurBrainBank