Investigator:
Erin Foster, PhD
Name of Institution:
Washington University, St.Louis, MO
Project Title:
Understanding engagement in research, clinical care, and community services among people of color with Parkinson disease
Investigator Bio:
Erin Foster is an Associate Professor of Occupational Therapy, Neurology, and Psychiatry at Washington University School of Medicine in St. Louis, MO, and a rehabilitation researcher with special expertise in daily function, activity performance, and community participation among people with Parkinson disease (PD). Dr. Foster received her clinical Doctorate in Occupational Therapy, PhD in Rehabilitation Science, and completed postdoctoral training in clinical investigation and cognitive science at Washington University School of Medicine. Dr. Foster directs the Cognitive and Occupational Performance Laboratory, which generates knowledge to guide the development of more effective and comprehensive rehabilitation programs for people with neurological disorders and cognitive dysfunction. Her research focuses on understanding how cognitive dysfunction in PD impacts everyday life, the development of cognitive rehabilitation and self-management approaches for people with PD, and improving health equity and reducing health disparities among people with PD. She has federal and foundation research grants related to these topics. As a licensed occupational therapist and consultant with Washington University’s Program in Occupational Therapy’s Clinical Practice, Dr. Foster helps guide therapists treating clients with PD and related disorders.
Objective:
To increase health equity and reduce health disparities among people with PD.
Background:
The vast majority of research on PD fails to include representative samples of people of color. Similarly, people of color with PD under-utilize specialty clinical care. This under-representation results in an incomplete understanding of the biological and clinical course of PD and considerable health inequities and health disparities among people of color with PD. In this project, we will begin to address this problem in the St. Louis area with a specific focus on people who identify as Black or African American. We will use a community and patient-engaged research process with a socioecological perspective to understand the reasons for underrepresentation among Black and African American people with PD in research, clinical care, and community services in the St. Louis area.
Methods/Design:
This study will use qualitative and community-engaged research methods. We will conduct group discussions (called Community Engaged Studios) with relevant community members to identify key stakeholders, ascertain priority areas of need, and determine culturally tailored approaches for engaging with Black and African American people with PD. We will also conduct individual interviews with Black and African American people with PD, their care partners, and their healthcare providers to identify factors that influence research participation, access to specialty clinical care, and engagement with community services. This information will guide the development of culturally appropriate ways to respectfully engage underrepresented groups with PD in future research, clinical care, and community services. Potential examples include education and awareness-building programs, research recruitment strategies, and service provider networks.
Relevance to Diagnosis/Treatment of Parkinson’s Disease:
Underrepresentation of people of color is widespread in PD research and care. It is a significant problem because it limits our understanding of PD, impedes the generalizability and impact of PD-related research findings, and reduces the quality and outcomes of patient care for all people with PD. This project will form the foundation for the development of effective engagement strategies to improve representation, diversity, and inclusion in future work. Ultimately, it will promote the translation of scientific discoveries into practice and improve the quality of research and care, health, and well-being of all people with PD.