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Information technology can empower parents and children to take an active role in health care decisionmaking

Information technologies can empower children and families by providing a mechanism for interaction with doctors and the health care system, according to Donna M. D'Alessandro, M.D., of the University of Iowa, and Nienke P. Dosa, M.D., of the University of Rochester. In a recent journal article, they discuss specific examples of interactive information technologies that facilitate information sharing and empower children and families: the electronic pediatric personal medical record (PPMR), customized health information systems, and interactive physician offices with E-mail and telemedicine capabilities.

The exact form of an electronic PPMR is evolving, but ultimately it may resemble personal financial management programs such as Quicken™. In the future, an interactive PPMR may reside on an individual's personal computer, commercial Web site, or other commercial system, and part of the record may exist as smart cards or electronic dogtags. The challenge is to make an interactive PPMR tailored to the patient and to link it with interactive online physician offices, so that the PPMR becomes the principal mechanism for physician-patient interactions.

One-half of Internet users say that they would like to E-mail their doctors. E-mail allows continuous access to the health care system for nonurgent matters such as care coordination, augmented screening, symptom monitoring, and disease self-management. It also is self-documenting. A message can be printed by patients who wish to refer to instructions and by office personnel for placement in the paper or electronic medical record. E-mail also could save time and add focus to in-person encounters.

Telemedicine is another example of information technology that could be a boon to patient care. For example, video conferencing could benefit home care personnel and family caregivers of children with medically complex needs for whom transportation to multiple specialists is costly and burdensome.

Drs. D'Alessandro and Dosa presented their research last year at a conference on Information Technology in Children's Health Care, which was supported by the Agency for Healthcare Research and Quality and the American Academy of Pediatrics.

See "Empowering children and families with information technology," by Drs. D'Alessandro and Dosa, in the October 2001 Archives of Pediatric and Adolescent Medicine 155, pp. 1131-1136.

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