Building a Community-Academic Partnership to Improve Underrepresented Group Awareness of Parkinson’s Disease and Research

Authors

Danielle N. Larson, Northwestern University Feinberg School of MedicineFollow
Jennifer Adrissi, Northwestern University Feinberg School of MedicineFollow
Madison Lyleroehr, Northwestern University Feinberg School of MedicineFollow
Emily Zivin, emily.zivin@northwestern.eduFollow
Karen Williams, Northwestern University Feinberg School of MedicineFollow
Tanya Simuni, Northwestern University Feinberg School of MedicineFollow

Keywords

Parkinson’s disease, Diversity, Education, Research

Disciplines

Nervous System Diseases | Public Health Education and Promotion

Abstract

BACKGROUND: Members of underrepresented groups (URGs) are more likely to have delays in PD diagnosis and less likely to receive specialized care when compared to non-Hispanic Caucasians. URGs are not proportionately represented in PD clinical research. Barriers to optimal diagnosis and treatment and research participation are multifaceted but include insufficient community knowledge of PD and research.

OBJECTIVES: To establish a community-academic partnership (CAP) for increasing knowledge of Parkinson’s Disease (PD) and research opportunities in underrepresented Chicago communities. Here, we describe the development, structure, and outcomes of this pilot program.

METHODS: The Chicago Movement Coalition (CMC) was established with academic leaders from two Chicago institutions, community leaders, people with PD and care-partners from two URG-predominant communities. Two community focus groups identified community needs regarding PD and PD research, informing the development of an educational intervention. Educational workshops (EW) were developed and executed to increase knowledge of PD symptoms, treatment, available resources, and research opportunities.

RESULTS: Qualitative analysis from two focus groups with 13 participants identified themes related to PD knowledge, perceptions of clinical research and the CMC, and EW ideas. Four community EWs were completed with 162 total participants. Of 97 completed pre- and post-workshops surveys, 98% were satisfied with the workshop and 94% felt more comfortable understanding PD signs, symptoms and treatments.

CONCLUSIONS: The CMC is a novel CAP established to address inequities in PD. The coalition experience can be used to inform and structure future community-engaged education and research initiatives aiming to decrease PD clinical and research disparities.

Recommended Citation

Larson, Danielle N.; Adrissi, Jennifer; Lyleroehr, Madison; Zivin, Emily; Williams, Karen; and Simuni, Tanya (2023) "Building a Community-Academic Partnership to Improve Underrepresented Group Awareness of Parkinson’s Disease and Research," Journal of Health Disparities Research and Practice: Vol. 16: Iss. 2, Article 6.
Available at: https://digitalscholarship.unlv.edu/jhdrp/vol16/iss2/6