From Terminal to Treatable: Tackling Glioblastoma Disparities at OurBrainBank With David Robles and Jacob Ellen

The Root of the Work at OurBrainBank

“After losing my mother-in-law to glioblastoma, I saw firsthand the disparities that exist in care. It’s a privilege to be part of an organization working to make a difference for others facing this diagnosis,” shared David Robles.

“I came to this organization because of my own brain tumor diagnosis during high school, so that’s how I originally got connected and became passionate about this work,” added Jacob Ellen. “Most of our research centers on quality of life in glioblastoma for both patients and caregivers, exploring how we can better support them going forward.”

Investigating Glioblastoma Disparities Through a National Survey

OurBrainBank completed a national survey, recently accepted as an abstract at the American Society of Clinical Oncology (ASCO) Annual Meeting, to identify disparities in glioblastoma care. The survey included 525 participants—23% patients and 77% caregivers—with demographics closely mirroring national averages for glioblastoma, though slightly younger and with higher levels of education.

“We wanted to understand how factors like geography, education, and insurance status influence access to care. The data on this was lacking, so we went directly to patients and caregivers to learn from their experiences,” explained Ellen.

Key Findings in Education and Access

The survey revealed that lower educational attainment was consistently linked to reduced access to essential aspects of glioblastoma care. Patients without a college degree were less likely to receive tumor testing, be informed about tissue storage, be offered clinical trials, or discuss second opinions with their providers. These disparities persisted even after adjusting for financial, geographic, and insurance factors.

“Education emerged as a key determinant of the care patients receive. Even after accounting for other variables, those with less education had less access and lower satisfaction,” said Ellen.

Additional findings showed that patients treated at National Cancer Institute (NCI)–affiliated centers were 3.5 times more likely to be offered clinical trials. Rural, older, and non-White patients were less likely to be offered trials and experienced longer times to diagnosis.

Implications and Next Steps

These results underscore the urgent need for standardized, equitable care. The team hopes their findings will inform policy changes and inspire better patient navigation and communication, especially for those outside major academic centers.

“Disparities in glioblastoma care are real, but they are also addressable. Documenting these gaps is the first step toward action and policy change,” Ellen emphasized.

Addressing Social Isolation

OurBrainBank is also launching the DANO Project (Digital Assessment Neuro-Oncology), a multi-institutional study using passively collected mobile data to assess social isolation in glioblastoma patients and caregivers. By tracking movement patterns and activity, the project aims to identify those at risk of isolation and inform interventions such as peer support and telehealth visits.

“Glioblastoma is not just a medical condition—it can be incredibly isolating. Our goal is to better understand and address this aspect of the illness journey,” said Ellen.

World Brain Tumor Day

In honor of World Brain Tumor Day, Robles and Ellen urge clinicians and the broader community to join their efforts.

“We’re proud to be a patient-led organization, driving research with and for patients. We invite everyone to get involved, support our work, and help ensure every patient receives the care they deserve,” Robles concluded.

For more information or to get involved, visit OurBrainBank.

Key Takeaways

• Disparities in Care: Education, geography, and insurance status significantly impact access to glioblastoma care.
• Patient-Led Research: OurBrainBank’s work is informed directly by patient and caregiver experiences.
• Innovative Approaches: The DANO Project aims to address social isolation using digital tools.
• Call to Action: Clinicians and stakeholders are encouraged to support efforts to standardize and improve care for all glioblastoma patients.

About the Speakers

David Robles is the Research and Outreach Program Manager at OurBrainBank. He leads research efforts such as their nationwide survey to improve quality of care for patients with glioblastoma. He is passionate about applying his skills and knowledge to address complex and impactful research questions and challenges.

Jacob Ellen is a medical student at Harvard Medical School and a Board Member of OurBrainBank. He has been leading research efforts at OurBrainBank since 2018. During college, he founded a nonprofit, One Life, to raise funds for pediatric brain tumor research. He has also served on a committee led by the Pediatric Brain Tumor Foundation to incorporate pediatric-specific cancer language into the New York State Cancer Plan.