e-Patients Perceptions of Using Personal Health Records for Self-management Support of Chronic Illness

Abstract

Chronic illness self-management is largely moving from healthcare professionals and into the hands of the patient. One tool that has been promoted to facilitate self-management support of chronic illness by policymakers, health advocates, providers, and consumers is the personal health record. Little is known about how consumers effectively use personal health records for self-management support and for productive patient-provider interactions. The purpose of this study was to learn from chronically ill engaged, experienced, and educated (e-patient) adults how and why they use personal health records for self-management support and productive patient-provider interactions. Eighteen purposively selected consumers were interviewed in two communities. Qualitative description methods were used, and we used a grounded theory approach to analyzing interview data, which was digitally recorded and transcribed verbatim. We identified four major thematic categories that capture the perceptions of the chronically ill using personal health records: (1) patient engagement and health self-management, (2) access to and control over personal health data, (3) promotion of productive communication, and (4) opportunities for training and education. Knowledge gained from the e-patient personal health record users suggest that making improvements to the portal system and providing education to consumers and providers will increase the utility among the experienced users and encourage new users to embrace adoption and use.

Shared decision-making using personal health record technology: a scoping review at the crossroads

“…The subcategory 'message care team' included synchronous and asynchronous communications with care providers and with social networks. Such communications increased patient engagement and resulted in productive patient-provider interactions necessary for improved patient outcomes [41], [52].…”

A comparative usability study of web-based personal health records.

“…This is directly related to the proposed study, which examined PHR usability for college-aged individuals. Though college-aged students have yet to be studied for PHR usability, veterans (Crouch et al, 2015;Shimada et al, 2014), chronically ill (Gee et al, 2015), lowincome (Czaja et al, 2014), and diabetic (Fuji et al, 2015) adults have been analyzed.…”

“…Like many of the other studies, the sampling was not random and the results are not generalizable. In addition, a narrow age range (50-65) was studied, so additional ages could be considered in future studies (Gee et al, 2015).…”

“…This study also addressed a gap in the literature of comparative usability studies. As previously mentioned, there are studies completed looking at individual populations (Crouch et al, 2015;Czaja et al, 2014;Fuji et al, 2015;Gee et al, 2015;Shimada et al, 2014) and individual PHRs (Price, Bellwood, & Davies, 2015;Curtis, Cheng, Rose, & Tsai, 2011;Ozok, Wu, Garrido, Pronovost, & Gurses, 2014;Monkman, & Kushniruk, 2013;Segall et al, 2011;Sheehan & Lucero, 2015), but there have been no studies solely focusing on gaps between different PHRs and attempting to determine a top performing PHR. One study recently completed took the first step in looking at PHRs comparatively (Czaja et al, 2015) but this study investigated "tethered" PHRs, which is a class of PHRs that are connected to a particular EHR.…”

“…The first gap that this study addresses is the lack of studies on college-aged students using PHRs. Past studies have focused on select user groups using a PHR (Crouch, Rose, Johnson, & Janson, 2015;Czaja et al, 2014;Fuji, Abbott, & Galt, 2015;Gee, Paterniti, Ward, & Soederberg, 2015;Shimada et al, 2014), but none have looked at college-aged students. In fact, of all these studies, only one study included a participant under the age of 30.…”