User Comprehension and EHR Integration of the RealRisks Decision Aid for Breast Cancer Risk Assessment: A Qualitative Study.

Abstract

RealRisks is a decision aid that integrates patient-generated and electronic health record (EHR) data using Fast Healthcare Interoperability Resources (FHIR). It offers modules to enhance understanding of breast cancer risk and a way for individuals to review and modify their EHR data before it is used in their personal risk assessment. RealRisks intends to encourage high-risk patients to take risk-reducing measures. To better understand how patients understand risk and barriers to action, we conducted in-depth interviews as part of a usability study to assess the clarity and interpretability of RealRisks. Overall, participants demonstrated an improved understanding of breast cancer risk after using RealRisks. However, challenges were noted for certain concepts, in particular, lifetime risk, how benign breast disease affects your risk, and the differences between hereditary, sporadic, and familial cancer. The EHR download feature was well-received, but some raised concerns about insurance and privacy/security.