Empowering children and families with information technology

Abstract

Patient empowerment is the enhanced ability of patients to actively understand and influence their health status. Information is the key to patient empowerment. Without information, children and families cannot engage in meaningful discussions or make thoughtful decisions regarding medical care. Information sharing is a model for patient interaction with the health care system that may significantly improve the care of children and families. This article focuses on information technologies that utilize user-centered design principles and interactive capabilities to facilitate information sharing and to empower children and families. Examples include electronic pediatric personal medical records, customized health information systems, and interactive physician offices with electronic mail (e-mail) and telemedicine capabilities. Ideally, these systems would all be integrated. Successful implementation of new technologies will require thoughtful attention and balanced solutions to tensions between information sharing vs security, and curatorship vs censorship. Issues related to access and the digital divide must also be addressed. Acceptance and usability of new technologies is predicated on close collaboration among physicians, researchers in informatics, librarians, educators, and other professionals with expertise in the human-computer interface. Child and family empowerment will be both the driving force and ultimate outcome of information-sharing technologies.