Making Quality Care Accessible for People of Color with Parkinson’s Disease

If 2020 taught Andrew Siderowf, MD, anything, it's the power of one's own circle of influence to affect meaningful change. For Dr. Siderowf, Professor of Neurology and Chief of the Movement Disorders Division at Penn Medicine, his circle is the Parkinson's disease community.

"Across the country, even in places where there's a diverse population, the proportion of communities of color who receive their care at a center like Penn's Parkinson's Disease and Movement Disorders Center is very small," he explains. "We understand the disease is slightly more prevalent among Caucasians and people of Latino descent. But we don't know if there are factors preventing people of color from seeking care for Parkinson's disease."

The question prompted Dr. Siderowf to launch a city-wide collaboration aimed at addressing social justice issues within the region's Parkinson's disease community. He's joined in this effort by Wendy R. Lewis, CEO of The Parkinson Council, and Tsao-Wei Liang, MD, Chief of the Movement Disorders Division and Co-Director of the Movement Disorders Program at Jefferson Health. "We want to determine if there are barriers to care for people of color with Parkinson's Disease so we can work to improve access," Dr. Siderowf says. "The founders of our center at Penn have always been committed to social justice — this builds upon that mission."

Using an approach that is one part education and one part relationship building, the team has forged alliances with local organizations that include Salem Baptist Church in Jenkintown, Pa., the Davis Phinney Foundation for Parkinson's, and the Penn Center for Community Health Worker's IMPaCT program. "We've been meeting regularly with these groups and their leaders and have been able to make some in-roads in the community," shares Dr. Siderowf. "This has been accomplished through educational events and outreach. We even established a hotline for IMPaCT community health workers to get patients fast tracked for appointments."

Once the restrictions necessitated by COVID-19 are lifted, the group hopes to spend time with community partners and the neighborhoods they serve. "While telemedicine has allowed us to extend our reach, our ultimate goal is to be embedded in the community — seeing patients at community centers or their primary provider's office," Dr. Siderowf says.

Dr. Siderowf is also looking within his own program for answers. "We have been joined by a medical student from Philadelphia College of Osteopathic Medicine who is interviewing our patients from diverse backgrounds to learn about their journey and how they came to us for their care," he says. "We know we don't have many patients of color, so these interactions allow us to work backward to gain a greater understanding around their care and diagnosis."

Dr. Siderowf adds that every effort is made to make patients of color feel welcome and comfortable. "We think there are a lot of people who we could be helping," he says. "We hope that through this work and outreach, we can provide a better care experience for everyone."