The Cedar Creek Apartment Complex community in North Raleigh includes families from at least seven different countries in Africa, Asia, and the Middle East.
These families, many of whom are refugees, speak Farsi, French, Swahili, Arabic, and other languages. They are building new lives in North Carolina, in a culture and language that is new to many of them. As is the case with many similar communities, their health care needs often go unmet.
To bring resources and education to this community and others like it, Duke HNS&CS has launched Project CHECKERS (Community Head and NEck Cancer Knowledge, Engagement, Research and Screening). This pilot project, funded by the Duke Cancer Institute (DCI), will be the department’s first community-based participatory research project — and the first such head and neck cancer (HNC) screening and cancer prevention education project in North Carolina.
Evolving Community Research
Led by Trinitia Cannon, M.D., Project CHECKERS is also the first HNC screening program that uses a mixed methodology; it is designed to use traditional surveys and screenings as well as interviews and focus groups.
The investigators believe that, compared to traditional methods, mixed-method research is an improved way to establish a community partnership, highlight gaps in the community’s knowledge and risk perception, and pave the way for successful future health interventions.
According to Co-PI Nosayaba (Nosa) Osazuwa-Peters, Ph.D., Project CHECKERS takes an important step in improving community engagement.
“Traditional research is very systematic, very top down. The researchers have knowledge and decide what they believe the community needs. But these outside scientific experts do not know the values, the culture, the knowledge, or the risks inherent in that community,” Dr. Osazuwa-Peters says.
For example, traditional surveys restrict participants to answering either yes or no; for many people, that binary does not tell a complete story.
“Project CHECKERS will help us understand the lived experiences of people in these communities,” Dr. Osazuwa-Peters says. “We’ll learn about context, and we’ll learn to ask questions that allow community members to express themselves. We’ll get responses we would never get based on yes or no.”
Building a Partnership
Project CHECKERS will start with focus groups and interviews with community members this fall, facilitated by Laura Fish, PhD, MPH, of the DCI's Behavioral Health and Survey Research Core. An advisory board will provide feedback from both clinical and community perspectives.
Lessons learned from these conversations will help the team develop a knowledge and risk factor survey that will be administered during two HNC screening events with the community in 2024.
The CHECKERS team will also recruit providers outside the department to participate in these events, to address other health concerns in the community such as primary care, mental health, and women’s health.
The long-term goal of Project CHECKERS is to show the benefits of tailoring HNC screening programs to the communities being served, and how that personalization can improve prevention, early detection, and overall survival in high-risk individuals who have limited access to care.
“The mixed-methods framework helps us understand not just whether an intervention works, but how, why, and for whom,” Dr. Osazuwa-Peters says.
Community Partners
Another plus to mixed-methods research is its appeal to community partners who might otherwise be hesitant to work with researchers.
“The design places a high value on the stories behind the numbers,” Dr. Cannon says, “so these projects are especially attractive to community partners such as faith-based organizations, whose priority is improving practice and outcomes, more so than research and advancing knowledge.”
Project CHECKERS will provide a valuable bridge between Duke and the North Raleigh International Baptist Church (NRIBC), which ministers to a large immigrant community. NRIBC’s Pastor, Patrick Warutere, invited Duke to participate in the church’s inaugural Health and Dignity for All Fair in Raleigh in 2022; Cannon and CHECKERS co-PI and Director of Community Engagement for the Department of HNS&CS, Leda Scearce recruited nurses, medical students, and resident volunteers to provide HNC screenings for the event.
“We immediately felt a kinship with NRIBC’s Pastor Patrick Warutere and his leadership team,” Ms. Searce says. “By the end of the day, we knew we wanted to continue to work together and set up a meeting the following week.”
Duke HNS&CS and the NRIBC team worked closely to develop the research plan and ensure that the goals and expectations of each group were aligned and transparent.
“That relationship with NRIBC has enabled us to incorporate the community’s perspectives into the development of Project CHECKERS,” Ms. Searce says. “Our aim was to amplify the assets and expertise of the community members themselves.”
Dr. Cannon anticipates that Project CHECKERS will become a framework for future projects.
“We are looking forward to similar initiatives in hearing health for older adults, right-hemisphere stroke awareness, and more.”