The Neurologist-Patient Mismatch: What Non-Neurologists Can Do
Jun 10, 2021 2:30 PM
People with neurologic conditions, such as migraine, ALS, and epilepsy, often require access to neurologists to improve their quality of life and health. For example, patients with Parkinson’s disease who are managed by a neurologist versus a primary care provider (PCP) have lower rates of hip fracture, nursing home placement, and death while patients with epilepsy have fewer seizures when managed by a neurologist. However, the disparity between available neurologists and the number of neurologic patients is continually growing, reducing patients’ “access to care, [worsening] patient outcomes, and [eroding] the career satisfaction and quality of life for neurologists.”
“By 2030, the US population will reach a turning point . . . researchers project a dramatic rise in common neurodegenerative diseases, with the incidence of stroke rising 20% by 2030, the prevalence of Parkinson’s disease doubling by 2040, and the incidence of dementia doubling by 2050.” And unfortunately, the American Academy of Neurology (AAN) has projected that by 2030, “only six states will have a supply of neurologists exceeding the estimated need.”
In response to this growing disparity of need verses supply of neurologists, the AAN commissioned the Transforming Leaders Program (TLP) to come up with a strategy to mitigate the mismatch using innovative ideas. TLP is a leadership development program consisting of 10 midcareer neurologists of multiple backgrounds, US regions, subspecialities, and institutions. The lead author of the TLP’s findings and published report is Dr. Jennifer Majersik, a professor of neurology at the University of Utah. According to this report, here are a few ways that you, as a patient or friend or family member of someone with neurological disorders, can make a difference.
- “The impact of patient engagement on fundraising was vividly demonstrated by the ALS ice-bucket challenge, which raised over USD $100,000,000 for ALS research.” For your next birthday, consider fundraising for the American Brain Foundation—to support a national charity that funds young investigators in neuroscience—or the University of Utah’s Department of Neurology—to support the training of young neurologists who go on to serve patients across the Mountain West and the entire US.
- Participate when you can through social media (including participating in condition-specific support groups) to report on your priorities (or those of your loved ones) so “that mismatch-alleviating efforts are applied to areas [you and they] will find most helpful.”
- “Patient engagement with advocacy could amplify a neurologist’s voice and provide a unique perspective of persons affected most by the mismatch. This is true for neurologic patients from specific populations (women, under-represented minorities, LGBQTA+, immigrants, lower socioeconomic status, etc.), as well as for specific disease entities.” As the moderators for an acute flaccid myelitis Facebook group “were invaluable in guiding [a recent AAN] discussion,” consider joining Facebook groups to share your experiences—both the successes and hardships.
- Become a neurology advocate here. You can volunteer with organizations, share your story, and encourage state and federal lawmakers to enact policies that ease the mismatch.
- Support telemedicine efforts since its qualities expand the reach and capability of a single neurologist to places and people who wouldn’t have access to high-level care otherwise.
- Encourage the youth in your life to consider a career in neurology as not only a way to reduce suffering from neurologic disease but also as a highly rewarding career.