Patients can track symptoms and anonymously send them to glioblastoma researchers around the world.
When Jessica Morris was first diagnosed with glioblastoma, it seemed that there was no consistent way to track symptoms for patients with the disease. So, Morris teamed up with other patients, clinicians and experts in the field to develop the OurBrainBank app, which tracks symptoms and anonymously sends them to brain tumor researchers around the globe.
Oncology Nursing News recently sat down with Morris to discuss the app, and the hope that it can bring to the brain cancer space.
Oncology Nursing News: How are symptoms traditionally tracked for glioblastoma, and what are some of the limitations to this approach?
Morris: With people like me living with glioblastoma, which is perhaps the worst possible kind of brain cancer, with a median survival of 14 months, our symptoms are not really collected in a systematic way. I speak to other people like me with this condition, not just in the US, but all over the world, and symptom tracking is pretty nonexistent in any methodical way.
That's one of the reasons why I founded, together with some fantastic physicians and other patients, a nonprofit called Our Brain Bank. What we're doing there is enabling people affected by the disease, both patients and the people who care for us, to everyday take time out and think, 'How does this disease actually feel? How did I sleep last night? How is my nutrition today? How is my depression?' The doctors want that because they want to spot insights and use the data that we're collecting in the form of the free Our Brain Bank app to be more exploratory in looking at how this disease actually relates to the individual experiencing it. They think that there may be some insights there that can lead to ultimately new treatments and a new approach.
How does the Our Brain Bank app work?
The Our Brian Bank app is a IRB-certified app, and you can download it from the app store or Google Play for free. It's available in the US for the moment, and we're taking it to other countries soon. You register using this code OBB100. Then you can choose up to 10 symptoms to track. They can relate to your own particular situation. Then, you are invited to donate that data anonymously to Our Brain Bank, and we're certified with the IRB, so you can ensure that we've taken every step possible to respect people's privacy. Then [the data] is available to researchers to do whatever they want.
In less than a year, we've had 3 sponsors of clinical trials come to us saying, “Can we access the data that you're using, because that would be really helpful as we're trying to set up new trials in glioblastoma.” This disease needs more experimental treatments. It needs more research. It needs more clinical trials. The data that we're collecting is helping that pursuit.
Our mission at Our Brain Bank is to move glioblastoma from terminal to treatable, powered by patients.
Can you talk about the data available thus far?
We went live with the app in the United States in March last year. In just over a year, with just a few of us hammering out a tweet every now and then and a Facebook post, we've got 400 regular users. We've collected between 7000 and 8000 data points, and that has blown our medical research team away. We've been published by ASCO online and so you can just look up Brain Bank and it will come up. We were invited to present at the Society of Neuro-Oncology in 2018. We had a poster session, and so we're trying to get out into the community.
What we're getting is very positive feedback from brain tumor researchers. This is new data. We all know that there are some macro trends hitting healthcare: digitalization and greater interest in patient centricity. We're surfing those waves, and we're saying by putting patients first and demonstrating empathy and thinking what is it like to be me, then you get to ask better questions. So, for symptoms, what is it like to experience living with this disease? This starting, we hope, allows medical researchers to ask themselves a different set of questions and think, “How can we use the reality of what it's like to live with the disease to unlock new insights and ultimately a cure?”
What is the biggest takeaway for patients?
I am a patient. I'm living with this disease. And I'm interacting with hundreds of patients on our app, and all I get back is, “This is giving me hope.” Hope is a very powerful lesson, and it's not just artificial hope. It's real hope. This is an ideologically pragmatic approach to defeating this disease. It's ideological because we want to stay alive; we're more ambitious for that, and it's practical because we've taken advice from some of the finest neuro-oncologists in the world. We have people from Columbia University, the Dana-Farber Cancer Institute, the University of Michigan, Memorial Sloan Kettering Cancer Center, the National Institutes, saying, “Yes this is a great idea.”
In healthcare, the freest agents are patients. The only investment we have is in ourselves and in our families. We don't have to oblige by any regulations, except those that we impose on ourselves. The regulation that I've imposed on myself is to stay alive for as long as possible. I have 3 children, and I love my life, and I love life. That means that I have a determination that is at least, if not perhaps more, as great as the finest doctors in the world. Together, we can do it.