Kelli Duprey, vice chair, OurBrainBank
I attended the 27th annual meeting and education day held by SNO…
OurBrainBank is working with world-class GBM doctors and data scientists to explore new ways to gather and research data reported by patients and caregivers ourselves. We see this as a way to accelerate the search for new treatments, and to help people on the GBM journey to improve their quality of life.
OurBrainBank is working with world-class GBM doctors and data scientists to explore new ways to gather and research data reported by patients and caregivers ourselves. We see this as a way to accelerate the search for new treatments, and to help people on the GBM journey to improve their quality of life.
So far, the research being done around GBM has largely been confined to clinical trials – limited in number, often difficult to get onto. Advances in science and technology are opening up a whole new world of health data. We want GBM patients and caregivers to be part of that new frontier, driving change through their own reported data.
OurBrainBank is excited to be working with Harvard scientists on a project that is designed to use data drawn automatically from smartphones to explore how sociability and social connection are impacted for GBM patients and caregivers. We have partnered with neuro-oncologists at the Dana-Farber Cancer Institute and data scientists at the Onnela lab within the Harvard T.H. Chan School of Public Health to devise the project.
At its heart is “passive data” – that is data that is generated on our smart phones without the user having to input information. We are all constantly generating data without even knowing it, such as step counts, messages sent, length of our phone calls. This type of data can help indicate how mobile we are, how connected we are to friends and family outside the home, and by similar measure how isolated we are. It can also help indicate whether we are troubled by disturbed sleep patterns, and so on.
OUR DATA MISSION
In the future we hope that patients and caregivers will have access to their own data through a dashboard of information that they can access directly through an app on their phones. This dashboard might also be shared with their clinician to inform treatment options and help people actively engage in research. It might also one day be able to act as an early warning system should people become immobile or cease to communicate with others.
In 2019 we piloted an app that patients or caregivers used to track symptoms, share data with clinicians, and donate their data to medical research. We collected this active data from around 700 people with GBM and their caregivers on topics like supplements, diet and mood. The results of this study were positive and showed that the data generated could be helpful for both patients and their clinicians.
However, we encountered a problem that commonly arises with active data collection: over time people stopped inputting their measurements into the app. It was clear that active data – input directly by people at regular intervals – was of limited use. That’s why we resolved in our next iteration of the app to find a more convenient solution, and this led us to consider the use of so-called ‘passive data’.
I attended the 27th annual meeting and education day held by SNO…
Our UK board members Andy Coulson and Richard Clemmow recently recorded a podcast to highlight the work of OurBrainBank.
After Jessica Morris was diagnosed with glioblastoma in 2016 until a few months before she died…
I attended the 27th annual meeting and education day held by SNO…
Our UK board members Andy Coulson and Richard Clemmow recently recorded a podcast to highlight the work of OurBrainBank.
After Jessica Morris was diagnosed with glioblastoma in 2016 until a few months before she died…