Protecting Privacy in the Child Health EHR

Abstract

In the United States and other industrialized countries, laws demand that all individually identifiable health information be secured from unintended disclosure and handled as private, sensitive information. While this protection extends equally to all information in a health record, information that pertains to mental health, reproductive health, physical abuse, and certain other areas with social impact is usually considered even more sensitive than other types of health information. The latter types of information may have special laws or professional standards that apply to how it is handled. All of these privacy and security issues become more complex in situations where minors are involved, because of real or perceived conflicts between the interests of the child and the interests of parents or guardians. In the care of adolescents, these issues become particularly difficult, and may affect how data are recorded or displayed in the EHR system, and the extent to which data may be available for research. Additional areas that present difficult challenges to privacy include fetal care, foster care, and situations where genetic information must be stored and interpreted. Security policies for access to systems intended to be used by patients (personal health records and patient portals) are complex. They can become even more challenging when the child has participated in clinical research and unexpected clinically relevant results are obtained. In this chapter we will discuss the prevailing regulations in the United States and the European Union that apply to privacy and security, and highlight pediatric aspects of these rules that apply to data.