Personal Health Information Management: More than just access to health records

Although many patients appreciate access to their health information through personal health records (PHRs) and patient portals, such tools provide support for only a narrow slice of patient’s personal health information management needs. Consider Sue, who is undergoing treatment for breast cancer and is trying to maintain her management position at work and care for her small child while she keeps track of what questions she has for her doctor, what side effects she is having from her chemotherapy, who is giving her a ride to her next appointment, what wig shop her friend recommended, etc. In our NIH-funded project, we sought to understand the information needs of breast-cancer patients like Sue as well as to develop new technologies that would meet those holistic needs. Based on fieldwork and design sessions with more than 50 breast-cancer patients, we have gained a deep understanding of what work breast cancer patients do in managing their health information and how that information is interwoven into all aspects of their lives. As a result of these studies, we developed new technology that supports cancer patients’ health information work in the context of their daily lives. In this presentation, I will give an overview of what key patient needs we uncovered during our studies, how we chose to develop technology to support those patient needs, and what areas need further research.

Speaker Details

Wanda Pratt is an Associate Professor in both the Information School and the Division of Biomedical & Health Informatics in the Medical School at the University of Washington. She received her Ph.D. in Medical Informatics from Stanford University, her M.S. in Computer Science from the University of Texas, and her B.S. in Electrical and Computer Engineering from the University of Kansas. Her published papers span a wide range of topics whose central theme is to understand the problem of information overload in a variety of health contexts and to develop new types technology to address those problems. She received an NSF CAREER Award for her work on literature-based discovery systems. She directs the iMed research group, and her work now focuses exclusively on consumer health informatics. She is the Foundations Track Chair for the 2011 Annual Symposium of the American Medical Informatics Association, was on the editorial board for the Journal of Biomedical Informatics, and served on the standing grant-review committee for the National Library of Medicine.

Date:
Speakers:
Wanda Pratt
Affiliation:
University of Washington

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