The Voice of the Patient and the Electronic Health Record

Abstract

The patient's voice, which we define as the words the patient uses found in notes and messages and other sources, and their preferences for care and its outcomes, is too small a part of the electronic health record (EHR). To address this shortcoming will require innovation, research, funding, perhaps architectural changes to commercial EHRs, and that we address barriers that have resulted in this state, including clinician burden and financial drivers for care. Advantages to greater patient voice may accrue to many groups of EHR users and to patients themselves. For clinicians, the patient's voice, including symptoms, is invaluable in identifying new serious illness that cannot be detected by screening tests, and as an aid to accurate diagnosis. Informaticians benefit from greater patient voice in the EHR because it provides clues not found elsewhere that aid diagnostic decision support, predictive analytics, and machine learning. Patients benefit when their treatment priorities and care outcomes considered in treatment decisions. What patient voice there is in the EHR today can be found in locations not usually used by researchers. Increasing the patient voice needs be accomplished in equitable ways available to people with less access to technology and whose primary language is not well supported by EHR tools and portals. Use of direct quotations, while carrying potential for harm, permits the voice to be recorded unfiltered. If you are a researcher or innovator, collaborate with patient groups and clinicians to create new ways to capture the patient voice, and to leverage it for good.