Staff Spotlight: Henry Edmonds, MEd
African Americans face a variety of health disparities related to Alzheimer’s disease, from overall incidence, to quality of care, to participation in research. Henry Edmonds, MEd, has been working to understand and mitigate these disparities in and around Durham for more than 20 years. In this “Staff Spotlight” interview, Henry Edmonds discusses the evolution of his work at the Bryan ADRC, the combination of factors that contribute to these disparities, and how his work at Duke fits into his ministry work and civil rights activism.
How long have you been at Duke? How long have you been at the Alzheimer’s Disease Research Center?
I started at the Joseph & Kathleen Bryan Alzheimer's Disease Research Center (Bryan ADRC) in 1995 as a statewide visitor with the African-American Community Outreach Program (AACOP). AACOP was organized as an advisory initiative to do three things: first, increase awareness among African Americans of Alzheimer’s disease; second, inform the Bryan ADRC of community perceptions about Alzheimer’s disease research; and third, to inform the Bryan ADRC of potential barriers that may limit access to the care and treatment of African-American.
I started work in my present staff position as Program Coordinator for the Statewide Visitors with AACOP in May of 2002. The Statewide Visitors are African-American community leaders representing various social, religious, and political organizations. Through this network AACOP gains direct input from the African-American community regarding attitudes, beliefs and practices that could create barriers to Alzheimer’s treatment care and research. This information has been used to address specific community needs and help clarify misconceptions that exist.
What are your responsibilities within the ADRC? What does a typical day for you look like?
When I came on staff in 2002 my job primarily was to coordinate the Statewide Visitors for the AACOP initiative. During those early years I expanded our Statewide Visitors network form the mountains to the coast and conducted biannual meetings on Duke’s campus to provide them with information and resources they could take back to their communities. Also the Bryan ADRC received input from them about how best to address African-American community needs with regard to Alzheimer’s. In addition to these meetings I planned and conducted a series of “African-American Caregiver Conferences: Role of Community and Church” in several major cities across the state. The idea for these conferences came from request by the Statewide Visitors to make the researchers at the Bryan ADRC more accessible to the community. These conferences particularly addressed the needs of African-American caregivers and helped to create a better relationship between caregivers and medical professionals.
However, my role has evolved from primarily coordinating the Statewide Visitors and educating the community about Alzheimer’s to focusing more on recruitment for all the studies we are doing at the Bryan ADRC. While some of the recruitment, particularly with the African-American community has been greatly enhanced by the groundwork laid in those early days with AACOP, the restricted target area of our current focus presents a problem with the same people being approached over and over for recruitment in various studies. Yet, there is a great deal of my time spent on attending health fairs where I have an opportunity to exhibit information and resources about our research, Alzheimer’s literature and possible ways to delay memory loss.
Much of your work involves recruiting African-Americans to participate in clinical trials for Alzheimer’s disease. What are some of the obstacles that have kept (and keep) African Americans from participating in this kind of research?
African-Americans have been hampered by lack of inclusion in clinical research studies based on the inability of researchers to recruit them. Some reasons for this exclusion may be the high level of mistrust African Americans have had of research (from the Tuskegee study and other incidents). Other major barriers to research participation may include access to transportation, inability to understand the IRB, adequate compensation, repercussions of disclosure, and potential covert purposes of the research.
These barriers to research participation are not insurmountable. Investigators must establish and sustain involvement and dialogue in the African-American community, much like what we did with AACOP where researchers formed a partnership with the community. In this way research volunteers are seen as partners and not research subjects. We had a great example of this approach with a church in Jacksonville, NC, where the pastor and congregation formed a partnership with the Bryan ADRC. The pastor and congregation were involved in the study plan from the start to define the goals and objective and disseminate the results. This Pastor presented results of his church’s participation at a major Alzheimer’s conference. Our experience in Jacksonville along with a growing body of evidence from other researchers demonstrates the impact of sustained community involvement on recruitment outcomes. I feel fortunate to have been a part of this creative approach to research here at the Bryan ADRC.
How can neurology as a field help to remedy these issues?
I’m not a neurologist and don’t think I’m able to relate neuroscience to the participation of African-Americans in research. Though my opinions may be controversial, I feel that much of medical research and not just neuroscience research does not adequately fund the recruitment portion of research protocols particularly when there needs to be a more deliberate effort to recruit African-Americans. In order to overcome the barriers of mistrust that exist among African-Americans, it is necessary to provide adequate funding that utilizes a broad array of literature, media, personal contacts and community involvement for recruitment.
What are some of the most important or compelling research questions involving African Americans and Alzheimer’s disease that have yet to be answered?
Many African-Americans dismiss the warning signs of Alzheimer's, believing that these symptoms are a normal part of aging. Because of this African-Americans tend to be diagnosed at later stages in the disease process, when current medications have little to no effect. Also, African-Americans tend to have several other comorbid conditions such as diabetes, obesity, and high blood pressure or hypertension that may increase their risk of Alzheimer’s disease.
What do you enjoy most about your work?
I am a retired pastor, church planter, and Old and New Testament Bible educator. As a pastor my ministry has taken me from rural areas of North Carolina to remote areas of Africa. With a background of sit-ins, marches, and demonstrations, on behalf of those who have been marginalized by poverty, oppression, and injustice I have always been a human and civil rights activist. My public and private lives combine as creative artist, educator, community activist, and church leader. As a community activist who is concerned about racial health disparities I have brought my experience to bear on the issues of Alzheimer’s disease and health disparities in African-Americans. I see my work at the Bryan ADRC is an extension of my ministry. Accordingly, I enjoy the opportunity to speak to groups about life choices to help them make decisions that may improve their quality of life and also help the Bryan ADRC form partnerships with the African-American faith community.
What passions or hobbies do you have outside of the Department?
I’m a bicycle rider and I enjoy riding my bike to benefit various causes like diabetes, multiple sclerosis, and Alzheimer’s disease. I ride about 200 miles a year training and participating in biking events. My longest ride was with the Alzheimer’s Breakthrough Ride from Philadelphia to Washington, DC. For the past two years, I organized Team Long Riders with Bryan ADRC staff, friends and family to participate in the Alzheimer’s Longest Day Ride. Our Team Long Riders raised over $6,000 for the Alzheimer’s Association this year. My hope is that next year I can get the whole Neurology Department to participate in this cycling event.
Edmonds gets ready for another "Longest Day" ride.