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.

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’.