# Community engagement studios to improve racial diversity and health equity in Parkinson’s

## TL;DR

This paper explores how community engagement studios can help include more Black or African American patients in Parkinson's research and care, addressing health disparities.

## Contribution

The study introduces and evaluates Community Engagement Studios as a novel method to improve racial diversity and inclusivity in Parkinson’s research.

## Key findings

- Community Engagement Studios helped identify cultural and environmental factors affecting Black patients' participation in Parkinson’s care and research.
- The method facilitated stakeholder alignment and improved the design of culturally appropriate Parkinson’s initiatives.
- Multifaceted factors like segregation, symptoms, and sociocultural barriers were highlighted as influencing engagement.

## Abstract

Black or African Americans (AA) with Parkinson’s disease (PD) are underrepresented in both care and research and experience significant health disparities. The existing literature provides limited guidance on how to enhance the engagement of AA individuals in PD care and research, particularly from the perspectives of AA patients, care partners, and healthcare providers. This project aimed to (1) describe the use of Community Engagement (CE) Studios as a community-engaged research approach to inform culturally appropriate and inclusive research and (2) examine factors influencing AA engagement in PD-related activities.

We conducted three CE Studios: one with AA with PD and care partners (N = 6), one with healthcare providers of AA with PD (N = 8), and one with AA with PD, care partners, and healthcare providers (N = 4).

The CE Studios informed the design (e.g., cultural appropriateness) and conduct (e.g., accessibility) of the planned PD project, as well as identifying stakeholders to engage with, improving alignment between research and the AA community. We highlighted the importance of multifaceted factors, including environmental (e.g., segregation), biological (e.g., symptoms), sociocultural (e.g., not being invited), and behavioral (e.g., empowerment) domains, which influence AA engagement.

The CE Studios method is a feasible and useful approach for understanding the perspectives of AA in PD. It is possible to conduct an in-depth exploration of community perspectives by synthesizing comprehensive analyses and leveraging additional frameworks. These efforts include identifying barriers to engagement, recognizing locally relevant individuals, and refining PD-related care to enhance cultural appropriateness.