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.
