By Jacob Elena
The perspective of patient-generated insights into glioblastoma (GBM) studies represents a paradigm shift in the way we approach the study and treatment of the most competitive and deadly form of brain cancer.
Progress in studies and treatment of GBM has been incredibly slow. The average life expectancy at the time of diagnosis is devastating, at 12 to 16 months, with only 5% of patients surviving beyond five years. Traditional strategies for tracking disease progression, such as imaging and clinical examinations, are rarely used at follow-up clinic appointments. Meanwhile, patient-reported questionnaires offer only a snapshot in time and can be compromised as the individual reports progressive cognitive decline.
There is a way.
Passive knowledge is the data that you and I generate through our smartphones, unknowingly. Its appeal lies in the fact that it is produced by definition without the active participation of the patient.
Still, it can encompass a wide diversity of data about the person, such as their physical activity levels, sleep patterns, and geographic insights such as distance traveled daily and screen time. This kind of knowledge is ubiquitous, but overlooked. It can provide insight into people’s daily lives and fitness.
And this knowledge is especially important in the context of WBG, a disease that causes gradual, if sophisticated at first, adjustments in cognitive and physical mobility.
One of the main benefits of passive knowledge gathering is its ability to provide a complete picture of a patient’s physical and cognitive fitness without requiring active self-assessment, which can be tedious for patients. For example, adjustments in physical activity patterns or routines were detected. through GPS awareness, it may simply indicate a decrease in fitness or the onset of new symptoms.
Similarly, a reduction in the speed and accuracy of reaction to texts or adjustments in the complexity of the language used in virtual communication may simply imply a deterioration in cognitive function. In fact, the ability to frequently monitor these facets can lead to a deeper understanding of affects. of GBM and other remedy regimens on patients’ daily quality of life.
This is a new frontier that can be helpful for certain patient populations, adding those who can’t make it to the hospital for normal follow-up visits, who don’t speak English, and/or who struggle with the generation and can’t. Find an easy-to-complete online quality of life survey.
A new collaboration between OurBrainBank, a nonprofit founded through GBM patients and their families, Harvard scientists and neurosurgeons, and neuro-oncologists at the Dana-Farber Cancer Institute, is moving toward leveraging this kind of passive knowledge for GBM patients. A non-profit organization led by patients and caregivers that focuses on patient-led studies and knowledge gathering.
By offering a continuous stream of real-time data, healthcare providers can better understand the effectiveness of treatments and their side effects, which will lead to more personalized and adaptive treatment plans that take into account the changing nature of the disease and each of them. Exclusive Patient Response.
Specifically, our collaboration will look at whether we can use those individual models to detect tumor recurrence in the past, perhaps even before it shows up on a CT scan. This could lead to previous treatments and ultimately better outcomes for patients.
Social isolation is a primary problem for GBM patients and can occur due to decreased social support, reduced energy and time to socialize due to treatment demands, and stigma associated with GBM.
Our goal is to use passive knowledge to better characterize the social isolation of GBM patients throughout the disease course, with the ultimate goal of scaling up support mechanisms and targeted interventions to improve the quality of life of GBM patients. We also hope to be informed more about the quality of life of caregivers with GBM, an organization too ignored in studies to date.
This multidisciplinary initiative to harness passive knowledge for WBG studies may be an important step forward in the fight against this challenging disease and complex diseases in general. By taking advantage of the features of trendy smartphones and the wealth of knowledge they generate, scholars, doctors, and patients can work in better combination with the results.
This technique only empowers patients by involving them in their own care, but it also paves the way for more responsive, personalized, and effective treatment.
Jacob Ellen is a medical student at Harvard and a member of the U. S. board of directors of OurBrainBank, a foreign nonprofit that advocates for GBM patients and their families in the United States and the United Kingdom. Please contact us at info@ourbrainbank. org if you would like to make a donation, please visit our online page www. ourbrainbank. org for more information.
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