However, linking information systems raises major challenges in the areas of privacy, legal and regulatory considerations, and technology, Caggana said. The system needs to be secure and to comply with federal and state regulations. Only appropriately authorized personnel should be able to access the data and only for the information which is proper for them to retrieve. New regulations may be needed, said Caggana, to allow data exchange while still protecting patient privacy and security. For example, people working with the CHI2 project have discussed how to maintain security, role-based access, and privacy if records are opened up to parents. Finally, many current technology systems cannot communicate easily with one another.

Despite these challenges, not instituting such a system would have much greater drawbacks, Caggana said. Data from electronic health records and regional health information organizations (RHIOs) would be more difficult and costly to use for public reporting purposes. The continued lack of a coordinated approach would make it more difficult for the Department of Health to share integrated child-related data with health-care providers. And practicing clinicians and public health programs would be unable to use existing Department of Health information to improve the clinical and public health outcomes of New York’s children.

The long-term outcomes of having such a system are largely unknown, yet the system offers sufficient promise that New York State is vigorously pursuing it.



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