Do Patients Understand how PHRs Work? Teresa Zayas-Cabán, PhD, Rupa Valdez, BS Department of Industrial and Systems Engineering, University of Wisconsin, Madison, WI Abstract. As Personal Health Records (PHRs) gain momentum, designers need to ensure that users understand the functions and benefits of PHRs. This study examines patients’ readiness to use PHRs. Results show that although most participants envision themselves using the system, five areas of concern about the use of PHRs remain. The gap between current and ideal understanding highlights the need for formalized methods to help patients understand what PHRs are and how to use them. Introduction. The third goal of the framework for the National Health Information Infrastructure states that patient-centered information will help consumers manage their health and health care decisions 1 . One of the strategies it calls for is the creation of personal health records (PHRs). Research has shown that PHRs can be beneficial to patients 2,3 ,however, it is unclear whether patients are ready to use this technology. The purpose of this study was to gauge patient understanding of and patient concerns about participating in health information exchange. Methods. The Brennan Research team conducted an exploratory study that consisted of interviews of seven adult patients or adults accompanying patients to a clinic at Boston Children’s Hospital. The 15-minute open-ended interviews consisted of two parts. The first part was comprised of showing participants four pictures that illustrate a hypothetical personal health record system. Pictures are not commonly used to illustrate health information exchange and, in this study, allowed patients to see where health information is stored, how it flows, and who may have access to it. The second part consisted of presenting participants with seven scenarios about potential uses of the system. The interview data were analyzed for common themes with regards to participants’ understanding of system use and its functions. Results. Participants’ responses regarding the use of the system revolved around five themes summarized in Table 1. Table 1: Summary of Major Themes Theme Participants’ Concerns Functionality How is health information obtained and shared Theme Participants’ Concerns Reliability How fast is the correct information available in the electronic record Privacy and Security Who is keeping the information secure and how are they doing it Access Who can have access to a patients’ electronic health record (e.g. parents, schools) Setting Permissions How can it be determined which providers have access to health records Conclusion. This study made use of illustrations to convey health information exchange through a PHR to consumers and gain insight about consumers’ understandings of how PHRs work. The majority of participants had a positive attitude about having electronic access to their health records and was able to envision how they would use the system to manage their health and health information. It remains, however, that participants are in need of guidance to understand the system’s features, security and privacy issues, and functions. Findings suggest a need to address users’ understanding of health record management and technology in both the design of and education about PHRs. Acknowledgements. The authors thank the Brennan Health Systems Lab for its support. Rupa Valdez and Teresa Zayas-Cabán were funded by the NSF Graduate Research Fellowship Program. The project is funded by National Library of Medicine (Grant # NLM 02- 103/VMS PIs: I.S. Kohane and K.D. Mandl), with evaluation subcontract to the University of Wisconsin- Madison. REFERENCES 1. Thompson TG, Brailer DJ. The Decade of Health Information Technology: Delivering Consumer-centric and Information-Rich Health Care. 2004 [cited 2005 February 23]; Available from: http://www.hsrnet.net/nhii/materials/strategic_framework.pdf 2. Ross SE, Moore LA, Earnest MA, Wittevrongel L, Lin CT. Providing a web-based online medical record with electronic communication capabilities to patients with congestive heart failure: randomized trial. J Medical Internet Research. 2004;6(2):e12. 3. Artinian NT, Harden JK, Kronenberg MW, Vander Wal JS, Daher E, Stephens Q, et al. Pilot study of a Web-based compliance monitoring device for patients with congestive heart failure. Heart Lung. 2003 Jul-Aug;32(4):226-33. AMIA 2007 Symposium Proceedings Page - 1169