Soon after Jessica Morris was diagnosed with glioblastoma (GBM), she asked her doctor why the disease is terminal. He explained that GBM is very aggressive, rare and complex, which makes it difficult to treat and to obtain funding for clinical trials.
She thought about how she was taking a range of treatments and how her symptoms weren’t closely managed in the weeks between her doctor visits. For example, if she was nauseous during her chemotherapy regimen, she might not specifically recall when in order to accurately report it to her doctor.
Then she had an idea. What if GBM patients could report their own experiences with the disease on a smartphone, and provide that data to medical researchers in hopes of better managing their disease and expediting the research process?
Jessica, a strategic communications consultant who lives in Brooklyn, New York, knew of a data-capturing platform previously used in trials studying Parkinson’s disease and arthritis made by a company called uMotif, and decided to use the tool for developing an app and a movement centered on people with GBM.
“That was my starting point,” she said. “Let’s center all our thinking on the patient experience. Let’s capture that in digital media. Let’s get that data in front of the world’s finest medical researchers.”
I’m very proud of what we’re doing. It’s at the opposite end of the spectrum of being diagnosed with a terminal disease. I feel totally empowered.
In March, with the help of neuro-oncologists, scientists, health marketers and other GBM patients, Jessica launched OurBrainBank. The movement encourages GBM patients to use an app to report their own data – including symptoms, mood and activities – in hopes of helping GBM patients better manage their disease and accelerating GBM research.
The movement began with a 100-day study focusing on patient symptoms. To take part, people with GBM who live in the U.S. can download OurBrainBank and begin tracking their data. Once collected, the data will be de-identified and researchers will be able to analyze it at no cost, subject to approval from OurBrainBank’s data access committee. Participants also will receive a detailed analysis of the findings. After the 100-day study, participants are encouraged to keep using the app. OurBrainBank will make any necessary adjustments to the app and launch the next phase of research.
“The data collected by OurBrainBank will be vital to researchers seeking to improve the treatment of GBM,” said Dr. Fabio Iwamoto, Deputy Head of Neuro-Oncology at Columbia University, co-lead of OurBrainBank’s Medical Advisory Committee. “The key to tackling this disease lies in research, and for too long we’ve lacked the critical insight from patients. The OurBrainBank app can help close that gap. This has the potential to have a real impact on the lives of GBM patients.”
Adam Hayden, a GBM patient and patient advocate who lives in Indianapolis, serves on OurBrainBank’s board. Adam and Jessica, who both write blogs about their experiences with GBM, became familiar with each other online and realized they had much in common in the way they live with their diagnosis. When Jessica eventually spoke to Adam about becoming involved in OurBrainBank, it didn’t take him long to realize it was something he wanted to be a part of.
“There was an opportunity to get in on the ground floor, to exercise influence and really shape a movement,” Adam said. “I see myself as a representative for the GBM community.”
In the future, Jessica plans for OurBrainBank to improve the clinical trial model. For example, any organization conducting a clinical trial in GBM will be able to contact OurBrainBank, and OurBrainBank will send information about the trial specifically to GBM patients who might benefit. More substantially, OurBrainBank is talking to a number of trial sponsors about how to better incorporate patients’ experiences and symptoms throughout the clinical trial process.
“That has the potential to significantly slash the costs and timeframe of recruitment, making it much more attractive for organizations to conduct clinical trials in GBM. At the same time, we are working with healthcare providers to show how we can make good the increasing interest in patient-centricity in clinical trials,” she said.
Jessica’s aware of the power she has as someone living with GBM. She wants to tap into that same power of others who have the disease.
“I’m very proud of what we’re doing,” she said. “It’s at the opposite end of the spectrum of being diagnosed with a terminal disease. From death, we’re bringing something to life. From something deeply depressing, we’re making something wholly positive. I feel totally empowered.”
Jessica Morris spends time with her husband, Ed Pilkington, in their Brooklyn, New York, home.