The PD Care Gap Measure/CAMPR project seeks to reduce barriers to care among ethnic minority groups with Parkinson’s Disease (PD) in order to improve timely access and engagement with neurological care. The project’s long-term goal is to identify modifiable barriers at the patient, physician, and institutional levels, and develop and test interventions that address them. As the first step in that process, we have conducted several focus groups with racial and ethnic minorities who are diagnosed with PD and/or their caregivers. The aim of these focus groups is to identify gaps in the current health care literature specifically for PD.
Comprised of community and academic partners, the multi-disciplinary team is using a community-based participatory approach (CBPR). This approach is oriented toward community action, with the explicit goal of working with communities and involving members of the study population as active and equal participants, in all phases of the research project, as a means of sustainably facilitating change.
Project Leads: Hiral Shah Lori Quinn
Project Coordinator: Danielle Kipnis
Project Members: Yu Gu Kelsey Kempner Michele Lin Chelsea Macpherson Alissa Pacheco
CAMPR project has recently completed a storybook called THE PD MOVERS - WE KEEP MOVING. This is a storybook that is a compilation of narratives of African American and Black individuals and caregivers who are living and thriving with Parkinson’s disease. The goal of the storybook is to inspire and connect individuals in the community by sharing the experiences of these remarkable individuals. We also hope these stories will educate others by removing the mysteries and misconceptions of Parkinson’s disease and provide useful resources regarding diagnosis and treatment to allow others to thrive with Parkinson’s disease. The storybook can be downloaded and shared for free.
El proyecto CAMPR recientemente completó un libro de cuentos llamado “THE PD MOVERS – WE KEEP MOVING”. Este es un libro de cuentos que es una compilación de narraciones de personas y cuidadores afroamericanos y negros quienes están viviendo y prosperando con la enfermedad de Parkinson. El propósito del libro de cuentos es inspirar y conectar a las personas de la comunidad compartiendo las experiencias de estas personas extraordinarias. También esperamos que estas historias eduquen a otros al eliminar los misterios y los conceptos erróneos de la enfermedad de Parkinson y proveer recursos útiles sobre el diagnóstico y el tratamiento para permitir que otros con la enfermedad de Parkinson puedan prosperar. El libro de cuentos se puede descargar y compartir de forma gratuita.