Factors Driving Patient Decisions to Access Electronic Health Records via a Breast Cancer Online Decision Aid linked to the Patient Portal

Abstract

A critical strategy in limiting breast cancer (BC) mortality is the early identification of high-risk patients and implementation of risk-reducing measures. RealRisks, an online decision aid constructed by our team to provide education on BC risk and personalized risk assessment, allows users the option to connect to their electronic health record (EHR) to extract requisite data to calculate BC risk via Fast Healthcare Interoperability Resources (FHIR). Using data from RealRisks user profiles, baseline questionnaires, and interview transcripts, we sought to understand the differences between the groups of patients who opted to download their data via the EHR vs. those who did not. A higher percentage of those who downloaded data (53.8% vs. 42.3%) identified as Hispanic/Latino compared to those who did not download. Thematic analysis suggested that while data security and privacy concerns may lead to hesitation, it is perhaps technological barriers that most significantly limit EHR download.

Figure 1.

Fourth screen of risk assessment module (populated with random data for demonstration purposes) prompting users to correct/verify the extracted data to be used for risk calculation.