The systematic ascertainment of structured family health information using an online patient portal

Abstract

Family Health Information (FHI) helps identify individuals who are at increased risk for adverse health conditions due to inherited genetic or environmental predisposition. Appropriate stratification of patients based on familial risk relies on the clinician’s ability to ascertain and the patient’s ability to report complete and accurate FHI. Complicating this factor, the collection of detailed FHI often requires more time than is available in the typical patient encounter in the primary care setting. As a result, FHI is often inconsistently and ineffectively communicated during clinical encounters, leading to FHI that is often incomplete, thus limiting its potential use for clinical decision-making. Yet, FHI epitomizes a cost effective strategy, and is critical to the emerging practice of genome-informed and personalized medicine. This thesis describes the development and evaluation of the www.MyFamilyatVanderbilt.com (MyFaV), a web-based portal for ascertaining structured FHI directly from patients.