Working with patient advocates is important for neurosurgeons and neurosurgeons in training. While neurosurgeons help patients through clinical work and conduct innovative research to advance treatment options, advocacy can have an outsized impact on patients across the U.S. Neurosurgeons who participate in patient advocacy gain a better understanding of the priorities of patients, their families and those who care about them.
As a member of the National Brain Tumor Society (NBTS) board of directors, I have had the opportunity to better understand the concerns and priorities of patients dealing with brain tumors and their caregivers. This helps me educate the broader patient population about brain tumor neurosurgery, clinical trials and what my institution offers. NBTS, its Informed in 30 educational program and virtual meetings with brain tumor community members have changed how I communicate with patients, including discussing treatment options and clinical trials. I have learned a great deal about how I can become a better neurosurgeon and think we would all benefit from such education, thus improving our delivery of patient care.
Patient advocacy can do much more than an individual neurosurgeon scientist can to attract research funds to the field. As an individual, I can only apply for so many grants. Patient advocates, tapping into the power of patient stories, can influence lawmakers, friends and families to provide funding for research to benefit the field of neurosurgery and neuro-oncology. NBTS annually disburses approximately $2 million to researchers from across the country. By participating in this process, I can have a hand in steering the direction of not just my lab but that of researchers across the country. In this way, I can encourage rigorous and innovative research that acknowledges the reality of this challenging disease and promote the critical need for neurosurgeons to be involved in clinical trials.
Patient advocate groups like NBTS can have an outsized impact on public policy and, importantly, serve as a platform for patients, caregivers and brain cancer medical providers to have a voice on critical issues facing our cause to ultimately eliminate these diseases and reduce disease burden. While I can call my senator as an individual to advocate for policy changes needed for our field, a group like NBTS has the resources necessary to make long-term relationships with lawmakers across the country, raising the critical needs of their constituents. Like the AANS/CNS Washington Committee, NBTS understands the needs of its volunteers and advocates. They combine the power of all of these individuals to encourage our representatives in Washington to address our concerns.
Every year, NBTS holds the Head To The Hill event (#Head2Hill), where brain tumor patient advocates descend upon Washington, DC, in person or virtually, to present a united front on key issues for the community. While increased federal research funding is a priority every year, directly impacting neurosurgeon-scientists, this year, NBTS also focused on extending telemedicine rules created during the COVID-19 pandemic. I participated in Head to the Hill in May. It was a wonderful experience working side by side with other brain tumor advocates from Georgia on these critical issues. Additionally, through NBTS’s Research Roundtable Program, I have been able to bring expertise to regulatory policy with the Food and Drug Administration in workshops and meetings on clinical trial design and endpoints.
Patient advocacy can also lead to rewarding and one-of-a-kind opportunities in one’s career. An exciting example is my recent opportunity to introduce President Joseph R. Biden, Jr. to unveil the extension of the Cancer Moonshot initiative. This initiative was established in 2016 by then-President Barack Obama to support cancer research and progress in treatment and care.
At its launch, the Cancer Moonshot set forth three ambitious goals: accelerate scientific discovery in cancer, foster greater collaboration, and improve data sharing. On Feb. 2, President Biden announced additional steps to “reignite” the Cancer Moonshot initiative to “ending cancer as we know it” by halving the number of cancer deaths in the U.S. in the next 25 years. Leaders from NBTS had a hand in crafting the initial Cancer Moonshot and sat with me at this prestigious event. Together, I am confident we will make real change for the brain tumor community and someday find a cure and better quality of life for our patients.
I would strongly encourage other neurosurgeons to establish relationships with patient advocates in their fields. My time working with NBTS has been an invaluable tool to improve the patient care that I deliver, improve research in the area of brain tumors and have a direct impact on public policy.
Editor’s Note: We hope that you will share what you learn from our posts. We invite you to join the conversation on Twitter by following @Neurosurgery and @NSTumorSection and using the hashtag #TumorSeries.
Edjah K. E. Nduom, MD, FAANS
Emory University School of Medicine, Department of Neurosurgery
Atlanta, Ga.
