Young Patients Matter: Advocating for Research

by S. Hassan A. Akbari; Matthew D. Smyth, MD, FAANS

Prior to July 2023, Alabama State Medicaid would not cover the cost of required helmeting after minimally invasive suturectomy for craniosynostosis. Despite research indicating the cost-effectiveness of minimally invasive suturectomy compared to open cranial vault repair, Alabama Medicaid elected to cover the surgery but not the post-operative helmeting. Therefore, families were left having to pay the bills for the helmeting that followed the less invasive surgery. This led to a disparity in treatment choices: Black patients and patients with Medicaid were more likely to undergo open repair compared to White and privately insured patients, interestingly at a higher cost to Alabama Medicaid. As a result of research highlighting this disparity (Akbari et al, 2023), Alabama Medicaid amended their policy to cover helmet therapy after craniosynostosis repair effective July 2023.

The study from Akbari et al shows how disparities and socioeconomic research can effectively lead to policy change. Research in these areas has increased recently in neurosurgery, and especially in pediatric neurosurgery. While much of this research satisfactorily highlights socioeconomic issues, more emphasis needs to be placed on advocacy and the implementation of solutions.

Fortunately, there are additional models of research-based advocacy within neurosurgery. For example, Dr. Ann-Christine Duhaime in her book, Minding the Climate: How Neuroscience Can Help Solve Our Environmental Crisis, shares not only the neurobiology of sustainable behavior, but also explains how she used evidence-based practices to plan a prototype green pediatric hospital. She also makes the argument for our role as physicians in climate advocacy. The Advocacy Committee of the American Society of Pediatric Neurosurgeons has issued a position statement on firearm safety and has also championed the cause of transitional neurosurgery care. Meanwhile, pediatric neurosurgeons from across the globe have created the Global Alliance for Prevention of Spina Bifida F (GAPSBiF) organization to advocate for global mandatory folic acid fortification to reduce the risk of spina bifida. Their efforts at the World Health Assembly in 2023 led to the passage of Resolution WHA76.19, the first neurosurgery-driven resolution at the World Health Assembly. Advocacy has become an integral focus of organized neurosurgery. During her American Association of Neurological Surgeons Presidential Address, Dr. Ann Stroink highlighted advocacy as the central focus of the organization’s 2023 annual meeting.

While there has been an increase in the amount of research done to highlight disparities in health care, especially in pediatric neurosurgery, Akbari et al, Duhaime, and the efforts of GAPSBiF, underscore the importance of the dissemination and implementation of research in neurosurgery and health care. Dissemination and implementation science pertains to studies on the efficacy of using evidence-based intervention and policies in healthcare. As neurosurgery becomes more involved in advocacy and policy change, it will become critical to evaluate our efforts through sound science. Through the various dissemination and implementation frameworks and models, the field of neurosurgery can better assess the impact of our interventions, specifically as they pertain to the socioeconomics of health care and advocacy.

Neurosurgeons face myriad issues pertaining to health care. Issues from the etiology of disease processes, the cost of healthcare, health care policies, resident education and hospital administration all become avenues for potential advocacy. As more research is done to highlight issues faced by our patients and surgeons, neurosurgeons progressively will have a greater responsibility in championing our causes. Through the leadership from our specialty, we can hope to continue to drive policy change.