Pediatric Informatics: Computer Applications in Child Health (Health ...

21 Personal Health Records 295
Basic user functionality and access control issues have been articulated but not
standardized to date. A single standard for content and structure, the Continuity
of Care Document (CCD), 13 has resulted from the harmonization of two published
standards (ASTM’s continuity of care record (CCR) and HL7’s clinical document
architecture (CDA) 14 ) for universal electronic health information exchange for
PHRs.
21.3 The Pediatric Perspective
The American Academy of Pediatrics (AAP) has made The Child Health Record,
a book for tracking and recording health information, including birth and growth
data by age, immunizations, illnesses, and health maintenance details 15 available
for distribution by hospitals and practices. In addition, an Emergency Information
Form (EIF) has been articulated and advocated by the AAP and the American
College of Emergency Physicians (ACEP) 16 for children with special health care
needs (CSHCN) in emergency or disaster situations. Both are currently available
only in paper format.
Electronic formats for pediatric PHRs have been explored. The EIF has been
piloted as a patient-carried USB drive in conjunction with a nationwide emergency
call center, 17,18 and “shuttle sheets” have also been explored for use by pediatric
oncology patients. 19 Access to external information sources such as laboratory
reporting systems and immunization and newborn screening registries has been
explored but are not widely implemented to date 20 to PHRs or EHRs. 24
Two recent investigative PHR projects that have been aimed to empower youth
in the areas of medication management in chronic disease (cystic fibrosis) 21 and in
the care transition from pediatric to adult care 22 have been sponsored by the Robert
Wood Johnson Foundation (RWJF) Project HealthDesign. Each uses a combination
of Web applications and mobile devices to empower an already technologyknowledgeable
population.
Recommendations on pediatric PHRs include:
All children should have access to a PHR, as an essential component of a Medical
Home regardless of income. Medicaid and SCHIP programs should provide
PHRs that are on par with those offered by private insurers and Medicare.
PHR data must be owned and controlled by the patient or the patient’s parent/
guardian, including authorization for access and emergency access. Data provided
by health professionals and institutions should be subject to comment and review
by the patient, but should not be modifiable. Data must be protected, technically
and legally, from abuse and unauthorized secondary or commercial use.
PHR content must include:
� Demographic and insurance information
� Contact information for family members, other support providers and health
care providers