At the closing of Hispanic Heritage Month, we want to share the progress the Davis Phinney Foundation has made to include and serve the Hispanic Parkinson’s community and to empower its leaders.
Our commitment to this work was reinforced in July when an article about Parkinson’s care in the United States highlighted that in 2019:
- Only 4.6% of Hispanic Medicare beneficiaries who live with Parkinson’s saw a movement disorder specialist, a rate significantly lower than all other demographic groups in the study
- Only 48% of Hispanic Medicare beneficiaries who live with Parkinson’s saw a general neurologist
- Hispanic Medicare beneficiaries who live with Parkinson’s utilized physical, occupational, and speech therapy services at significantly lower rates than all other demographic groups in the study
Moreover, the research suggests that Hispanic people are less represented among people living with Parkinson’s than they are in the overall Medicare population. The authors of the study write, "It is not known if this is indicative of disparities in screening and diagnosis of Parkinson’s [...] or if it points to a potential genetic or environmental component of Parkinson’s.”
While this research found poor utilization of care for all demographic groups, data suggests that Hispanic people with Parkinson’s access specialty care at significantly lower rates than other demographic groups. There may be multiple explanations for these trends, but they suggest that this community would benefit from having more support.
What We Are Doing to Support Hispanic People Living with Parkinson’s
Our efforts for the Hispanic Parkinson’s Community are led by our Hispanic Community Engagement Manager, Dr. Claudia Martinez. Other Spanish-speaking staff, including Juan Carlos Gordillo Perez and Sia Urroz, support our educational content and programming for the Hispanic Parkinson’s community.
Core aspects of our programs include:
We created a Spanish-language website where visitors can find Parkinson’s information, including educational interviews with medical professionals, people living with Parkinson’s, care partners, and community leaders. This website is helping build a virtual community where Spanish-speaking people can share their stories about living well with Parkinson’s to connect and inspire others.
Hispanic Scientific Committee
We have a dedicated team of medical professionals who share our vision and support our work within the Hispanic Parkinson’s community. They form our Scientific Committee and, with their guidance, we are constantly generating educational material that includes the voices of healthcare professionals, Hispanic people living with Parkinson’s, and their care partners.
On the second Monday of each month, we host Espacio Parkinson. We invite the Spanish-speaking community to join us on Facebook during this event via YouTube. Participants share their stories and engage in meaningful conversations about specific topics to find answers and inspire positive change.
Hispanic Ambassador Leadership Program
We adapted our Hispanic Ambassador Leadership Program by listening to bilingual Spanish-speaking leaders who helped us shape the content and processes so they remain culturally relevant. The program application and orientation were launched in Spanish this summer, and we received a great response from the community. We are in the process of onboarding 30 leaders from 10 countries, including Spain, the United States, and various countries in Latin America.
Hispanic Leadership Conference
From November 30 through December 2, 2023, we will host our Hispanic Leadership Conference in Phoenix, Arizona. This national event is built on collaboration, community leadership, and cultural empathy to ensure that Hispanic people with Parkinson’s and their families can access the resources needed to live well. This bilingual event (delivered in English with simultaneous interpretation to Spanish) will provide training and support to community leaders to help improve how Latine individuals and families live with Parkinson’s.
The Davis Phinney Foundation is here to help all people with Parkinson’s take action to live well and connect with their communities. This is an ongoing effort, and we invite you to contact us to share your feedback and ideas.
We have a lot planned for 2024—our 20th anniversary year! We look forward to continuing to help all people with Parkinson’s live well today and in the future.