September 14, 2020
Researchers at The University of Kansas Cancer Center are partnering with local faith-based leaders to reach a population that suffers from cancer disproportionately: African-Americans, who have the highest death rate and shortest survival rate of any racial or ethnic group in the U.S. for most cancers.
According to the American Cancer Society, much of the difference in survival is attributed to socioeconomic barriers that limit access to timely and appropriate care, including lack of insurance and mistrust in medical professionals. Crystal Lumpkins, PhD, associate professor and member of the cancer center’s Cancer Prevention and Control research program, seeks to address these obstacles through culturally-tailored messaging that resonates with segments of the African-American population.
“Tailoring strategies that are inclusive of this community is critical as experts have traditionally assumed what matters and what is important,” Dr. Lumpkins said. “The voice of the African-American community has been lost in the shuffle.”
From a conversation to a consortium
Dr. Lumpkins’ journey to address these needs began about 20 years ago when a close member of her family died of cancer, and it was further propelled by an informal conversation with her pastor a decade ago.
“I was talking to my pastor, whose family member had recently received a cancer diagnosis. It was a very raw, honest conversation about the unique challenges African-Americans face when it comes to cancer.” Dr. Lumpkins said. “He proposed we convene other local pastors to have a broader discussion.”
From this suggestion, additional conversations and funding from the National Institutes of Health (NIH) sprang Faith Works, a consortium network comprising academics, researchers, patients, faith-based and community-based organizations. The founders of the program sought to address cancer health disparities among African-American and other underserved and underinsured individuals. People want to receive health advice from a trusted source, and a church’s close-knit, community-centered environment seemed the perfect backdrop.
Lynn Miller, a member of the Faith Works Community Advisory Board, joined the program at its inception. At the time, she was director of ministry for a local Kansas City church.
“Of all the institutions developed for and by African-Americans, the black church is number one in its stability and coherency,” she said. “Because of its stability, it is the place where all African-Americans - individuals from every walk of life - exist together. It is the foundation for networking in our community.”
Faith Works initially centered on colorectal cancer and has since evolved to address additional health disparities. According to Dr. Lumpkins, colorectal cancer was an obvious disease to initially concentrate efforts because African-Americans have the highest incidence of it and there was little awareness of the risk for the disease. This population is also 15 to 20 percent more likely to die from the disease than patients of any other race. Colorectal cancer can be caught early and even prevented altogether through early detection methods, including colonoscopies.
“I was surprised to learn that among African-Americans, there was little known about colorectal cancer,” Dr. Lumpkins said. “This reflects a long-standing issue where the information is ‘out there’ and may have been disseminated, but it may have not been circulated to the right places where it can be prioritized, understood and trusted. We wanted to establish our program as a trustworthy source for cancer screening information.”
Funded by the National Cancer Institute, the first study included a series of focus groups and semi-structured interviews among church pastors and congregants concerning church-sponsored colorectal cancer screening messages. A subsequent study determined the feasibility of a religiously and culturally tailored intervention in church settings. Today, Faith Works includes more than a dozen churches/faith-based organizations and has served as the foundation for dozens of community-based participatory research efforts, publications and grants addressing a variety of diseases.
Stepping out of the researcher role
Through Faith Works, Dr. Lumpkins has gained valuable insights leading to more effective ways to communicate with the African American community about cancer prevention. In addition to faith-based leaders, Faith Works comprises researchers and graduate and undergraduate students. Part of Dr. Lumpkins’ job is translating the importance of community-based participatory research to fellow scientists. This can be a difficult concept for some researchers to grasp, according to Dr. Lumpkins, who often uses her personal experiences to guide her work.
“Many times, I have had to step out of my researcher role to embrace my experience as an African American who once lived in the urban core. I’ve also leaned on my experience as a person of faith, reflecting on the times when I had more trust in a higher power than medicine,” Dr. Lumpkins said.
Community-driven research takes patience, perseverance and empathy. A back-and forth dialogue with community members is imperative to design various types of research projects and programs.
“For us to address cancer health disparities, we must acknowledge what has happened in the past and what is happening now. We must also give people an opportunity to talk creatively and openly about what could be in the future – helping to define and give power to people who have felt that they have had little to no control or power,” Dr. Lumpkins said. “We are all in this together.”