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

Опубликовано 17 августа 2016, 3:35

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 patientΓÇÖs 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 patientsΓÇÖ 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.