Information use in chronic illness care: The role of the electronic health record in bridging patient experience and healthcare contexts

Abstract

Chronic health conditions typically manifest as pervasive and ongoing in daily life, in contrast to their curative and episodic mode of treatment in most healthcare settings. A growing sense of provider-patient disconnect and calls for healthcare reform have emerged new chronic care models that advocate for a team approach to care that is heavily supported through the use of an electronic health record (EHR). This interdisciplinary research examines the use of the EHR in chronic illness care within a best-practice environment to understand how provider practices frame patient experience. Drawing on data from 144 hours of observation and 49 interviews with healthcare providers at three VA primary care clinics, we examined information use in provider work and patient care. Findings indicate the EHR as a de facto representation of the patient and a ubiquitous force in shaping provider work and patient care. The organizational context and provider work practices as reified in the EHR privileged and elevated objective indicators of the patient's level of "control" while obscuring subjective information and patient narrative that could be useful in problem-solving disease management. The pervasive use of objective information in patient care and communication framed patient experience in the healthcare context in ways that seemed abstracted from their lived experience with illness, contributing to providerpatient disconnects. Providers were stymied by not having enough information to support effective self-management or a more complete picture of patients' everyday life experiences, but there was no clear pathway for capturing, retrieving, and using such information in patient care. We suggest that EHR design for chronic illness care should make patients' experiential information more readily available and enable patient input and patient-provider coconstruction of information. More work is needed to further understand how everyday life experience is presented and received in patient encounters.