The Parkinson’s Foundation has a longstanding commitment to remove barriers to care, make research more inclusive, and ensure that information and resources are accessible. We know that there is more we can do to address these barriers as a Foundation and as a community. We are intentionally building on this commitment so that all people with Parkinson's disease (PD) and their families have what they need to manage this disease and live the best quality of life. Highlights of some of our work to date include:
Equity in Care
The Parkinson’s Health Access Study launched in 2020 aims to examine care needs for underserved people ― those who live in geographic areas without providers ― and hard-to-reach people who live in areas that make access to care difficult. These findings, available in spring 2021, will guide our work. The Foundation is conducting this study in partnership with Allison Willis, MD, at the University of Pennsylvania, a Center of Excellence.
The Parkinson’s Foundation makes research more efficient and effective by involving those living with Parkinson’s in the research process. Parkinson's Advisors in Research and Training is creating a model for patient engagement, with focus on diversity and inclusion, to further patient-centered comparative effectiveness research (CER) at our Centers of Excellence. This project is made possible through an award from the Patient Centered Outcomes Research Institute (PCORI).
Women and Parkinson’s: Closing the Gender Gap in Research and Care is the first national research and care agenda specific to women with Parkinson’s to address the disparities that they experience. This project is made possible through an award from PCORI.
Inclusiveness in Research
The Hispanic Parkinson’s Advisory Council develops strategies to increase clinical research education, awareness and participation among Spanish-speakers with Parkinson’s throughout the U.S. The focus of this pilot initiative is to further communicate important initiatives, such as PD GENEration: Mapping the Future of Parkinson’s Disease and the Parkinson's Outcomes Project, to Hispanic and Latino communities.
The Promotores Project engages health educators, who are part of and embedded in the Hispanic community, to provide peer-to-peer education and support. This pilot project, with the goal of expansion in 2021, allows the Foundation to work with promotores to share critical Parkinson’s information resources, and show how care and education are linked to clinical research participation within the Spanish speaking community.
Emory University, a Parkinson's Foundation Center of Excellence, received Foundation funding and collaborated with Foundation Research Advocates to launch “Parkinson’s Diversity Recruitment for Research.” This project engaged representative communities in research through outreach and education, with a focus on Black communities. The program led to an increase in enrollment of four times the number of racial and ethnic minorities in Emory research.
Access to Information and Resources
Parkinson’s Foundation Community Grants give special consideration to local programs that offer services for diverse and underserved populations. Recently funded local programs include accessible health and research education for diverse populations living with Parkinson’s in resource limited and hard-to-reach communities in Atlanta, GA; establishing the Chicago Movement Coalition for Parkinson’s disease and clinical trial education in under-represented communities in Chicago, IL; and increasing awareness, education and support for the LGBTQ community living with Parkinson's in Golden Valley, MN.
Foundation programs and initiatives continue to expand engagement, outreach and resources to incorporate and engage minorities in the PD community including Care Partner Summit, PD Health @ Home, Moving Day and community based programs.
Our events, publications, podcast, website and more have significantly expanded, with resources in Mandarin, podcasts that engage the Black community and Spanish-speaking Helpline information specialists.
Stay up to date with the Parkinson’s Foundation, along with our latest resources and events aimed to help make life better for people with Parkinson’s at Parkinson.org/Subscribe.