The Promise of Patient Portals for Individuals Living With Chronic Illness: Qualitative Study Identifying Pathways of Patient Engagement (Preprint)

Abstract

BACKGROUND Patients play a critical role in managing their health, especially in the context of chronic conditions like diabetes. Electronic patient portals have been identified as a potential means to improve patient engagement; that is, patients’ involvement in their care. However, little is known about the pathways through which portals may help patients engage in their care. OBJECTIVE Our objective is to understand how an electronic patient portal facilitates patient engagement among individuals with diabetes. METHODS This qualitative study employed semistructured telephone interviews of 40 patients living with diabetes since at least 2011, who had experienced uncontrolled diabetes, and had used secure messaging through a portal at least 4 times over 18 months. The interviews were recorded, transcribed, coded, and analyzed using primarily an inductive approach to identify how patients living with diabetes use an online health portal to support diabetes self-management. RESULTS Overall, patients who used the portal reported feeling engaged in their health care. We identified four pathways by which the portal facilitates patient engagement and some challenges. The portal provides a platform that patients use to (1) better understand their health by asking questions about new symptoms, notes, or labs, (2) prepare for medical appointments by reviewing labs and notes, (3) coordinate care between VA (Veterans Affairs) and non-VA health care teams, and (4) reach out to providers to request help between visits. Several patients reported that the portal helped improve the patient-provider relationship; however, aspects of the portal design may hinder engagement for others. Patients reported challenges with both secure messaging and access to medical records that had negative impacts on their engagement. Benefits for patient engagement were described by many types of portal users with varying degrees of diabetes control. CONCLUSIONS Patient portals support engagement by facilitating patient access to their health information and by facilitating patient-provider communication. Portals can help a wide range of users engage with their care. CLINICALTRIAL