Effective Cancer Risk Communication to Prevent Disparities in the Era of Precision Medicine

As genetics and genomics become part of mainstream Medicine, these advances have the potential to reduce or exacerbate health disparities. Gaps in effective communication (where all parties share the same meaning) are widely recognized as a major contributor to health disparities. The purpose of this study was to examine cancer genetic counselor-patient communication, to assess its effectiveness from the patient perspective, and to pilot intervention strategies to improve it. We used multiple inductive methods, including standard ethnographic techniques to systematically observe and audio-record genetic counseling sessions, and qualitative interviews with observed patients using the audio recordings to stimulate recall and probe specific aspects of the communication. Data analyses were conducted using grounded theory. We observed 64 English-, 35 Spanish- and 25 Cantonese- speaking public hospital patients (n = 124) and 10 Genetic Counselors in 170 appointments, and interviewed 49 patients who had been offered testing. We identified a fundamental mismatch between the information provided by genetic counselors and the information desired and meaningful to patients. Several components of the communication that contributed to this mismatch and often resulted in ineffective communication included: (1) too much information; (2) complex terminology and conceptually difficult presentation of information; (3) information perceived as not relevant by the patient; (4) unintentional inhibition of patient engagement and question-asking; (5) vague discussions of screening and prevention recommendations. To address these communication barriers, we adapted from other fields of Medicine to the genetic counseling context and pilot tested evidence-based strategies for effective communication with limited literacy patients. Our findings indicate a need to transform the standard model of hereditary cancer risk communication. The increasing access of diverse populations to genetic services, high rates of limited health literacy in the US, and growing complexity of genetic information have created a perfect storm. If not directly addressed, this convergence can be expected to exacerbate health disparities in the genomic age.