Project HealthDesign: rethinking the power and potential of personal health records

Abstract

Project HealthDesign, a multi-year, multi-site project sponsored by the Robert Wood Johnson Foundation with additional support from the California HealthCare Foundation, is designed to stimulate innovation in personal health records (PHRs). Project HealthDesign teams employed user-centered design processes to create designs and prototypes of computer-based applications to support and enhance human health for a wide range of patients, from children with chronic health conditions to elders transitioning from hospital to home. A program design philosophy encouraged designers to envision PHRs as a suite of personal health information management tools, or applications, separate from, but drawing upon, personal health data from a variety of sources. In addition to information contained in one's medical record, these personal health data included patient-supplied clinical parameters such as blood glucose and daily weights; as well as patient-generated observations of daily living (ODLs) - the unique, idiosyncratic cues, such as sleep adequacy or confidence in self care, that inform patients about their abilities to manage health challenges and take healthy action. A common technical platform provided infrastructure services such as data standards and identity-management protocols, and helped to demonstrate a scalable, efficient approach to user-centered design of personal health information management systems. The program's ethical, legal and social issues consultancy identified challenges to acceleration of action-focused PHRs: personal control of privacy choices, management of privacy in home conditions, and rebalancing power structures in shared decision making.