Past lessons important to the future of community health, expert says
A small group of people can make a difference in fostering better health in a community and often have the most success in creating change, said Dr. William “Bill” Jenkins, keynote speaker for the Jean Mills Health Symposium held Feb. 4.
Jenkins, adjunct associate professor of epidemiology at Morehouse School of Medicine and senior fellow with the Institute for African American Research at the University of North Carolina at Chapel Hill, spoke about the myths and realities of community participatory research.
It begins at the grassroots level, with the endorsement and support of those living in the community. That means practicing cultural humility and not assuming you know what’s best for a community, he said.
Jenkins served two decades as supervisory epidemiologist in the National Center for HIV, STD and TB Prevention at the Centers for Disease Control and Prevention and managed its Minority Health Activities Program. He managed the Participant Health Benefits Program, which assures medical services to the survivors of the Tuskegee syphilis study. Jenkins also served as an expert on minority issues in disease transmission as chief of the research and evaluation statistics section in the Division of Sexually Transmitted Diseases Prevention and as manager of the National Minority Organizations HIV Prevention Program.
His role in caring for the survivors of the Tuskegee syphilis study gave him a great appreciation for and understanding of best practices for community research.
The study, which ended in 1972, followed 600 men with syphilis for 40 years. Medical students, nurses and CDC physicians took samples in the field, collected and recorded data. Wherever the men they went, they were followed to make sure they did not receive treatment so results could be documented. “It was one of the best managed programs in public health history,” Jenkins said.
Many returned from World War I with the disease.
“Syphilis is the great imitator,” Jenkins said, since the disease can mimic heart disease and other ailments. “It’s a fascinating disease as much as most people think HIV is today.”
While the syphilis study eventually was condemned, it was landmark in its methodology. “How you do community research can be taught by this method,” Jenkins said.
As a result, researchers have changed practices that include institutional review boards, voluntary informed consent and federal policy for the protection of human subjects.
The basic tenets of bioethics are do no harm, be fair, allow autonomy and beneficence.
How a community benefits must be kept at the forefront. “Drug companies will pay a lot of money for community participatory research,” Jenkins said. “Just because you’re doing research in a community doesn’t mean you’re doing research for the community.”
In its seventh year, the Jean Mills Health Symposium drew 150 participants and had a waiting list, said Dr. Stephen Thomas, dean of the ECU College of Allied Health Sciences, which sponsors the event in collaboration with the ECU Medical & Health Sciences Foundation, Pitt Memorial Hospital Foundation and Eastern Area Health Education Center. The event coincides with Black History Month.
Jean Elaine Mills earned her bachelor’s degree from the University of North Carolina at Chapel Hill in 1977 and a master’s in public administration with a concentration in community health from ECU in 1984. She died from breast cancer in 2000.
Amos T. Mills III, Jean’s brother, created the symposium in an effort to keep her spirit of discovery and community outreach alive.
“Health care is the most important thing in people’s lives,” Mills said in recognizing professor emeritus Donald Ensley, who spearheaded the creation of the event and taught Jean Mills while she was a student at ECU. “If you don’t have good health, you don’t have a good quality of life.”
Video from the event will be shown on ECU’s Ch. 99 and will be posted on the College of Allied Health Sciences website at www.ecu.edu/ah.
The symposium featured more than 20 recognized experts on the principles of community engagement: mutual benefits, collaborative relationships and empowerment. Presentations focused on the scholarship of engagement and on service to the community with an engagement model addressing health disparities and minority health.