Changes in DNA, called mutations, can increase the likelihood of developing cancer. Specifically, people with mutations in the BRCA 1 and 2 genes are much more likely to develop hereditary breast and ovarian cancers. But how do people know if they have these mutations?
Genetic testing allows doctors to see these tiny changes. Knowing the presence of these mutations will allow doctors to check more frequently for signs of breast and ovarian cancer.
Yet racial minorities, especially black women, are less likely to participate in genetic testing. Even fewer engage in follow-up services, such as recommended interventions to reduce risk.
To change that, a research team at the Medical University of South Carolina led by Caitlin G. Allen, Ph.D., plans to teach community health workers (CHWs), who often live in the communities they serve, how to share genetic screening with their peers importance. Allen is an assistant professor in the Department of Public Health Sciences at MUSC.
“Community health workers serve as a bridge between communities and researchers and clinicians, helping to answer questions, provide support services and address the social determinants of many health problems,” Allen said. Support community health workers.
As a first step, the team worked with community health workers to understand their needs and preferences for genetics training materials.They described these efforts in a November article Journal of Cancer Education.
Knowing that some minority communities distrust researchers and medical personnel, Allen and her team recruited community health workers because they were already trusted members of the community. Researchers found that community health workers were already curious about genetics and eager to learn more.
Community health workers are very interested in learning more about cancer and genetics, but training to support them in building these competencies and genetic literacy does not exist. “
Caitlin G. Allen, Ph.D., Medical University of South Carolina
With funding from the American Cancer Society and MUSC Hollings Cancer Center, Allen and her team created the training by holding focus groups with community health workers and physicians, asking them to agree on which courses should be included. After training materials were developed, community health workers told researchers whether the materials were clear and easy to understand.
Combining feedback from these focus groups, Allen and her team ultimately completed a 10-module CHW training called the Keeping Each Other Engaged Through IT Program (KEEP IT). Researchers conducted a 12-hour training virtually with 26 community health workers. This training effectively improved genetic knowledge and abilities and was highly praised by community health workers. The full results of the KEEP IT training course will be released soon.
“It’s an honor to be able to take the idea of community health workers teaching genetics to their communities and put it into practice,” Allen said.
But the researchers’ work is far from over. They are applying for funding to expand the training to four other southern states.
“Working with community members to design and deliver training is really effective,” Allen stresses, “and it’s important to have a community perspective in all research.”
Medical University of South Carolina
Allen, CG, et al.. (2023). Developing a hereditary breast and ovarian cancer and genetics curriculum for community health workers: KEEP IT (Keeping Each Other Engaged Through IT Program) community health worker training. Journal of Cancer Education. doi.org/10.1007/s13187-023-02377-7.