Dr. Gilbert Hosts: Our Journey to Parkinson’s Research Participation
Clinical trials are essential for advancing Parkinson’s disease (PD) research. However, recruiting participants—especially a diverse group that reflects people of different races and ethnicities—remains a significant challenge. On this special episode of Dr. Gilbert Hosts, we will explore this important issue and highlight an inspiring initiative designed to encourage, inform, and educate people with PD about the clinical trials process, with a particular focus on communities that in recent history have been under-represented in research studies.
This multifaceted initiative, which includes the book PD Movers – We Participate in Research and the documentary Credible Messenger, features community-authored stories about research participation. The book is an extension of PD Movers – We Keep Moving, a powerful compilation of narratives from Black and African American individuals living and thriving with PD. The current initiative also includes educational discussion guides and culturally sensitive resource materials to support engagement and understanding.
We will discuss a wide range of topics related to clinical trial participation, including:
- Different types of clinical trial opportunities and how to learn about them
- The practical aspects of participating in a clinical trial
- Strategies to overcome barriers to participation
- Addressing myths about clinical trial participation in Black and African American communities
- The importance and benefits of diverse participation in clinical research
ABOUT OUR SPEAKERS
Denise B. Coley
Denise Coley is the Founder & Co-Managing Partner of Enable Your Vision, a firm that provides supplier diversity consulting to drive economic vitality for diverse businesses, corporations, and the communities in which they reside. For more than two decades, her leadership and vision have had a significant impact on the world’s global supplier diversity business development activities and their communities, benefiting from her leadership, advocacy, mentorships, and programming. Currently, Denise is using her talents and time in support of those interested in improving the lives of individuals and families impacted by Parkinson’s Disease (PD) and health disparities. She Co-Chairs with her husband Bernard, the Special Interest Group (SIG)-Black Diaspora focusing on closing health disparities in under-engaged communities, educating health resources and research organizations on engaging communities in a culturally sensitive manner, bringing Black patient advocacy perspectives to PD research and increasing Black Community participation in clinical research studies. Denise and Bernard are working on numerous initiatives to increase awareness of PD and PD resources in under-engaged communities of color. She is a member of PD MOVERS. THE PD MOVERS – WE KEEP MOVING storybook is a compilation of narratives of African American and Black individuals and caregivers who are living and thriving with PD. The goal of the storybook is to inspire and connect individuals in the community by sharing their lived experiences.
Denise has served on national and international boards throughout her career. Currently, she is a Parkinson’s Advocate focused on increasing Parkinson’s awareness, education, and resources to under-engaged and remote global communities, to empower and advocate for their respective PD journey. She served on the Parkinson’s Foundation, People with Parkinson’s Advisory Council, and was a member of the Parkinson’s Foundation’s Research Advocate (PAIR). Denise was a member of the Parkinson’s Foundation California Chapter Board of Advisors and served as the Mission and Outreach Chair during her 3-year term. Denise served on the World Parkinson Coalition, Engaging People with Parkinson’s in Clinical Research committee and is a member of the PD Avengers, Wellness Committee. She is a member of the Michael J Fox Foundation (MJFF) Patient Council and a member of the Stanford Alzheimer’s Disease Research Center, Community Advisory Board (ADRC).
R. Bernard Coley
R. Bernard Coley is an executive with 50+ years of experience in the high technology industry. He has served on many boards in senior leadership roles for 54 years. He has a lengthy career of volunteer work including community development projects, supporting the arts, youth development, business leadership development and facilitating/mentoring entrepreneurial development in underserved and indigenous communities. He is an experienced facilitator and mediator. Mr. Coley is aiming his talents and time in support of those interested in improving the lives of individuals and families affected by brain health diseases, specifically Parkinson’s Disease (PD). He Co-Chairs with his wife, Special Interest Group-Black Diaspora which focuses on closing health disparity gaps in under-engaged communities, educating health resource and research organizations on engaging communities in a culturally sensitive manner, bringing Black patient advocacy perspectives to PD research, and increasing Black Community participation in clinical research studies. Mr. Coley is passionate about patient voice inclusion and serves on patient advocacy councils with national and international pharmaceutical companies. Facilitated by the Multi-Regional Clinical Trials Center of Brigham and Women’s Hospital and Harvard (MRCT), he especially enjoys his work as the patient voice in a multidisciplinary industry team developing and maintaining a plain language glossary of clinical research terms. He joins his wife Denise in numerous initiatives to increase awareness of PD and PD resources in underserved communities of color. He and his wife Denise host social groups and safe spaces for Black women and men of the PD Community.
Anita Parker
Anita Parker is a licensed social worker and serves as the Community Outreach Director of St. Luke A.M.E. Church in New York City. She is a community partner to the research team and a staunch advocate for bringing resources to NYC Black and Hispanic communities.
Dr. Hiral Shah
Dr. Hiral Shah is an Assistant Professor of Neurology at Columbia University Irving Medical Center in the Division of Movement Disorders, and Medical Director of the Parkinson’s Foundation Center of Excellence. She is committed to learning how to identify, address, and overcome barriers of stigma and discrimination to improve care access and provide holistic solutions for those with neurodegenerative disorders.