Prospective Personal Health Record Use Among Different User Groups: Results of a Multi-wave Study Deborah Beranek Lafky Thomas A. Horan Deborah.Lafky@cgu.edu Tom.Horan@cgu.edu Kay Center for E-Health Research Claremont Graduate University Claremont, CA 6 Abstract Personal Health Records (PHRs) systems are a subject of intense interest in the move to improve health care through consumer empowerment. Yet, despite a surge of PHR offerings from a variety of providers, little re- search has been done to learn what prospective users want in a PHR and how they will use these systems. Because managing their personal health care informa- tion is a novel undertaking for most people, traditional technology adoption study methods are difficult to em- ploy in researching PHRs. This paper reports on a us- er-centered design study that combines qualitative and quantitative approaches to investigate how health sta- tus may affect user needs for PHR. Preliminary analy- sis of the results indicates that users with disabilities differ from others in their PHR preferences. The results suggest that a particularly motivating factor for dis- abled individuals is the way in which a PHR will func- tion when emergency services are required. 1. Introduction A fundamental part of consumer empowerment through e-health is the implementation of personal health records systems (PHR) 1 . By 2014, most Ameri- cans will have access to a PHR if present Federal goals are accomplished [1]. Yet there is relatively little re- search aimed at understanding what the target users for such systems will find useful, much less compelling. 1 While there is no single authoritative definition for PHR, the term primarily refers to computer applications that allow individuals to view and interact with their own medical data. The ultimate driver for PHR adoption has not been ob- vious, even as momentum coming from top-down ini- tiatives has increased. The study described in this paper is among the first to investigate PHR user needs em- pirically. In this study, we examined the hypothesis that PHR user needs will vary based on health care status, e.g. whether a person is well, not well, or disabled. Us- ing a triangulation approach combining qualitative and quantitative methods, we sought to probe some of the potential PHR user’s most basic motivating factors: privacy, security, portability, and interoperability. 2. Personal Health Records Adoption: Challenges of Measurement PHR adoption presents a somewhat unusual avenue of inquiry in that much of the grounding framework of the traditional Technology Acceptance Model [2] is difficult to apply [3]. One reason for this state of affairs is that PHR represents a novel task to nearly all users. This complicates any understanding of user preferences and behaviors. Task analysis and modeling is funda- mental to user-centered design and to solving a core piece of the challenge of building a useful health care informatics infrastructure [4]. Acceptance becomes even more difficult to assess when users present with disabilities [5], like many of those who participated in this study. Unlike other types of information systems, which model manual tasks with which users are familiar, PHR introduces a new kind of task, managing health infor- mation, which has not previously been performed by most people. Perceived ease of use is difficult (maybe impossible) to measure when prospective users have neither a physical nor mental model of the system being Proceedings of the 41st Hawaii International Conference on System Sciences - 2008 1530-1605/08 $25.00 © 2008 IEEE 1