As volunteer faculty and a clinical professor at George Washington University Medical Center (GWUMC), Zachary T. Levine, MD, FAANS, trains the GWUMC and Walter Reed National Medical Center (WRNMC) residents in functional-stereotactic neurosurgery. He served as board member of Parkinson’s Action Network (PAN) and Parkinson’s Foundation of the National Capital Area (PFNCA) where he is a current member of medical advisory board. In these roles, he assisted in the development of patient care policy on the national and local levels and co-led the annual PFNCA patient symposium in 2021.
Being a neurosurgeon should go beyond the traditional laying of hands. In functional neurosurgery, we often see our patients over a longer period of time than those with an acute illness or injury. We are in the unusual neurosurgical position of treating chronic disease which allows for long-term connections with our patients. We often discuss medical, as well as surgical treatments and innovations. Although there is currently no cure for Parkinson’s Disease (PD), treatments such as deep brain stimulation (DBS) and MRI-guided focus ultrasound (MRgFUS) can significantly improve quality of life for those living with the disease. As a neurosurgeon, I have seen first-hand the positive impact that patient advocacy can have on PD patients and their families.
Patient advocacy in the context of PD can take many forms, including education, support and advocacy for improved care and research. Education is essential for patients, for their families, and healthcare providers, as it enables them to better understand the disease, the available treatments, and symptom management. In my practice, I provide my patients with accurate and up-to-date information about their disease and surgical treatments, as well as tips on how to manage their symptoms and improve their quality of life.
Support is also critical for patients and their families. Many people with PD experience social isolation and depression; this can exacerbate their symptoms and decrease their quality of life. Support groups and other community resources can help patients and their families connect with others who are going through similar experiences and provide them with emotional support and practical advice. I often refer my patients to local support groups and other resources that can help them and their families cope with the challenges of living with PD. I encourage surgeons to play an active role in local support groups or local chapters of national support groups. This is time well spent.
Advocacy for improved care and research is also vital. While there have been significant advances in the understanding and treatment of PD in recent years, there is still much work to be done. Advocacy can help to increase funding for research, as well as improve access to quality care for patients. As a neurosurgeon, I am often involved in advocacy efforts, both locally and nationally, to increase awareness and to push for policies that support patients and their families.
One area where patient advocacy has been particularly impactful is in the development and dissemination of information about surgical treatments. Patient advocacy has played a critical role in improving access to DBS, MRgFUS and other, newer therapies. Increasing awareness of benefits and risks, and ensuring that patients and their families have the information and support they need to make informed decisions about their care is our role as surgeons.
An example of the impact of patient advocacy is the creation of patient-led advocacy groups. These nonprofit organizations are dedicated to improving the lives of people with PD and their families. These organizations have been instrumental in increasing awareness of PD and promoting research into the disease, as well as advocating for policies that support patients and their families. In addition, they play a critical role in advancing the development and dissemination of surgical treatments such as DBS and MRgFUS through funding research and clinical trials, developing patient education materials, and providing support to patients and their families. I encourage involvement in these patient-led groups to assist their efforts and gain a better understanding of the patient experience.
Another example of the impact of patient advocacy on DBS has been the development of patient-centered care models. Patient-centered care is an approach to healthcare that emphasizes the needs and preferences of patients and their families. It involves them in decision-making about their care. In the context of DBS, patient-centered care can help to ensure that patients and their families have the information and support they need to make informed decisions about their care and that their preferences and goals are considered in the decision-making process. I am committed to providing patient-centered care to all my patients, their families and caregivers. That commitment is reinforced by my participation in advocacy groups and their efforts to improve the lives of people with PD and advance treatment options.
