Study Rationale: Neurodegenerative diseases including Parkinson's disease (PD) disproportionately impact underserved communities due to barriers in research participation and awareness. Community Health Workers (CHWs), trusted within these communities, can bridge this gap with enhanced training. NYU Langone Health (NYULH), in collaboration with The Michael J. Fox Foundation (MJFF), proposes developing a curriculum to increase CHWs' knowledge of PD and clinical research. This initiative aims to improve research literacy, community engagement and diverse participation in clinical trials. Leveraging the strengths in medical education and community health at NYULH, this program seeks to drive PD education, support research and address health disparities nationwide.
Hypothesis: We hypothesize that CHWs who receive specialized training in our program will demonstrate significantly higher levels of literacy regarding clinical research and PD and will therefore be better able to engage and educate communities about clinical research opportunities than CHWs who have not received this training.
Study Design: We will develop and implement a curriculum, conduct training and evaluate our approach over the course of two years. In year 1, we will develop an online asynchronous curriculum for CHWs, incorporating modules on clinical research, brain health and PD. We will use stakeholder interviews and focus groups with PD and CHW experts and CHWs to guide content creation. In year 2, we will pilot, implement and disseminate the training with CHWs at NYULH and affiliated MJFF community-based organizations (CBOs). We will use pre- and post-training surveys to assess the resulting changes in research, brain health and PD health literacy.
Impact on Diagnosis/Treatment of Parkinson’s disease: Successful implementation of this CHW training program will facilitate establishment of a robust network of community advocates equipped to drive PD education and support research initiatives across the country. This effort will advance PD research, bringing us closer to understanding the disease, its impact in underserved communities and developing treatments.
Next Steps for Development: Next steps with this collaboration and training will involve scaling the program to additional CBOs and integrating it into existing CHW networks nationwide. Also, the program will be adapted for other neurodegenerative diseases to enhance community engagement and clinical research participation for other diseases.