Our overarching goal is to develop and establish a cancer genetics curriculum that is pertinent, culturally sensitive and understandable by a community population who is not English dominant and of a lower literacy level than that of the general New York City population. The curriculum will teach how genetics can affect health, why it is relevant to one's everyday life, and why understanding genetics is important for understanding an individual’s risk for cancer, and response to cancer treatment. Our approach will prepare our patient population in the understanding of the importance of participation in research and in understanding the concept of personalized medicine. . Before embarking on curriculum design, we determined it a necessity to better understand our target population. Content, literacy levels, learning preferences and teaching modalities are all informed by the needs and desires of the target population. We began our process by designing, implementing, and completing a needs assessment of our target population. Data from close to 500 needs assessment surveys led to an informed development of discussion questions for our focus groups. After being granted access to the population at a local CBO, via the embedding of our CHW and oversight by the CHE, it was found that literacy and acculturation levels varied greatly, and an effective curriculum could not be designed without clear information on our target population’s level of understanding of genetics and heredity, cancer and health and preferred learning modalities. Our focus groups yielded a breath of qualitative data that support and enhance the survey data and most importantly, we received information that could not and had not been captured on our surveys.
Uploaded are our survey and focus group tools.