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Empowering Children and Families With Information Technology
Donna M. D'Alessandro, MD;
Nienke P. Dosa, MD
Arch Pediatr Adolesc Med. 2001;155:1131-1136.
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.
From the Children's Hospital of Iowa, University of Iowa, Iowa City
(Dr D'Alessandro); and the Strong Children's Research Center, University of
Rochester College of Medicine and Dentistry, Rochester, NY (Dr Dosa).
Corresponding author: Donna M. D'Alessandro, MD, Department of Pediatrics,
Children's Hospital of Iowa, 200 Hawkins Dr, Iowa City, IA 52242-1009 (e-mail: donna-dalessandro{at}uiowa.edu).
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