Roundtable in US capital aims to help shape Parkinson’s care
Parkinson's Foundation bringing together experts for Sept. 4 meeting
A roundtable in the U.S. capital, hosted by the Parkinson’s Foundation, is aiming to find new ways to improve access to healthcare providers and treatment, define inroads for innovation, and align stronger policies in Parkinson’s disease care by centering patient and caregiver voices in a nationwide planning session.
The National Roundtable on Parkinson’s Care and Innovation, to be held Sept. 4 in Washington, D.C., will bring together leaders and experts from different fields. Its goal, per a press release from the nonprofit, is to reach consensus on urgent needs and identify practical solutions for improving care for people living with Parkinson’s.
“The Parkinson’s Foundation is proud to continue to forge intentional and strategic partnerships with top leaders in healthcare and specifically, brain health,” said Sneha Mantri, MD, chief medical officer of the Parkinson’s Foundation. “This roundtable discussion will help shape the future of [Parkinson’s disease] care for years to come.”
Parkinson’s is a neurodegenerative disease that gradually damages nerve cells in the brain, causing a range of motor and nonmotor symptoms that worsen over time.
The disease is becoming more common in the U.S. as the population grows older. At the same time, however, there is a shortage of specialists — especially in more remote areas of the country.
According to the foundation, the number of neurologists trained in Parkinson’s care who are practicing in the U.S. number about 660, with fewer than 10 serving rural areas. As a result, fewer than 1 in 10 patients ever see one of these specialists.
Goal is new recommendations for improving Parkinson’s care in US
Neurologists are doctors who specialize in the brain and the nervous system. Those with expertise in Parkinson’s not only fine-tune medications to better control symptoms, but also guide patients through other aspects of care. Having access to these specialists is especially important for patients and caregivers who face daily challenges.
According to the foundation, the roundtable will gather ideas and turn them into an issue brief, or a clear summary document. This brief will include personal experiences from patients and caregivers, highlight promising innovations, and suggest national strategies for improving Parkinson’s care.
Patient voices will play a central role in shaping the recommendations, per the foundation.
“When all voices come together with a shared purpose, progress happens faster and with greater impact,” said Jon Blum, former principal deputy administrator and currently chief operating officer of the Centers for Medicare & Medicaid Services, based in Baltimore.
By elevating the experiences of patients and caregivers, this roundtable will define the most impactful levers for change across the care journey, driving tactical strategies and transforming how [Parkinson’s disease] care is delivered and supported nationwide.
One of the main goals is to support the National Parkinson’s Project, a federal initiative focused on preventing the disease, easing its symptoms, and slowing or stopping its progression. For patients, this initiative, developed under the National Plan to End Parkinson’s Act, could mean stronger policies in the future.
“By elevating the experiences of patients and caregivers, this roundtable will define the most impactful levers for change across the care journey, driving tactical strategies and transforming how [Parkinson’s disease] care is delivered and supported nationwide,” Blum said.
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