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

402 J.H. Schneider
on governance, unresolved privacy/security issues and barriers from hospital and
practitioner competition. Many of these issues continue to face current HIEs.
31.4.2 Registries
Despite the mostly false start of CHINs, public health efforts to aggregate patient
information have partially succeeded through registries. Examples of registries
include:
Immunization information systems (IIS) 9
State newborn metabolic 10 and hearing 11 screening registries
Lead poisoning databases 12
Birth defect and rare disease 13 registries
Tumor 14 registries
While these often are governmental entities, the net result for the patient can be the
same as a nongovernmental HIE if the health data is made available to clinicians.
In the case of vaccine registries, an electronic link from the Houston vaccine registry
to the LINKS system in Louisiana was credited with saving a large number of
children from revaccination following Hurricane Katrina (Boom J., 2005).
An example of a registry that provided effective and timely access to health
information is www.katrinahealth.org, a Website created by a public–private collaboration
following Hurricane Katrina. It pooled medication and other data from
pharmacy benefits companies, e-prescribing networks, insurers, Medicaid, and the
Veteran’s Administration. To use the Website, physicians and pharmacists would
obtain security clearance that gave them access to medication histories of refugee
patients from areas affected by the hurricane.
The experience with katrinahealth.org illustrated some of the positives and
negatives that HIEs face. 15 Among the positives were that it did aid care, as 30%
of queries were successful in obtaining health information. Among the many
negatives was that finding the right patient was difficult as the system required
five pieces of matched identifying information to retrieve a record. Children, with
frequent name changes and caretakers who often might not even know birthdays,
were probably affected more by this.
31.4.3 Regional Health Information Organizations (RHIOs)
In mid 2004, Dr. David Brailer was appointed the first National Health Information
Technology Coordinator. During his tenure, he fostered the growth of Regional
Health Information Organizations (RHIOs). A RHIO has been defined by the
National Alliance for Health Information Technology as both “an organization
that oversees and governs the exchange of health-related information among
organizations according to nationally recognized standards [and] a health information
organization that brings together health care stakeholders within a defined