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What are some of the privacy and security considerations for PHRs for children?

Maintaining privacy and security is essential to the success of personal health records for children and adults alike.  However, there are additional privacy and security concerns associated with pediatric PHRs.  These concerns become complicated during adolescence, when the PHR must adapt to and transition with the developments of the patient and his or her changing needs.  Considerations for privacy and security for PHRs for children must take into account the changing control of the PHR and the flow of information to the record that is visible by patients, families, and different providers.

The pediatric PHR, unlike other PHRs, is unique in that it is initially controlled by parents or guardians and becomes more patient controlled as the patient ages and enters adolescence.  When patients are young, providers and caretakers may have concern regarding the amount of health information to share with the patient.  In adolescence, on the other hand, there may be sensitive information in the PHR that the patient would like to keep private and the PHR must account for this privacy concern since the caretaker still plays an active role in the adolescent’s care.  Sensitive information that may be withheld from children could include issues such as parental health information or genetic information, and patients may wish that certain information remain private such as treatment for substance abuse or mental and sexual health conditions.  Patients and families together may also be concerned about the security involved when health information is transferred to other entities.

Related Resources:

Whose personal control? Creating private, personally controlled health records for pediatric and adolescent patients - Journal of the American Medical Informatics Association
The Health Insurance Portability and Accountability Act of 1996 Privacy Rule - Department of Health and Human Services
Summary of Health Privacy Provisions in the 2009 Economic Stimulus Legislation - Center for Democracy & Technology