regulations help assure consumers of M/SU services that their privacy will be protected, they also can create barriers to accessing data and complicate coordination of care, especially with respect to the use of EHRs and electronic networks. Public policy must balance the sometimes competing priorities of respect for data privacy and facilitation of appropriate data access to support care coordination.
Many privacy regulations address the exchange of paper-based information, although some, such as those contained in HIPAA, address data in electronic formats. However, none of these regulations explicitly address the more recently proposed and innovative components of the NHII, such as:
Regional health information organizations (RHIOs) that will provide electronic networks containing data elements essential to care coordination and accessible by diverse participating health care organizations in a defined geographic region.
PHRs that are consumer controlled, incorporate selected data elements from existing health records, and include data a consumer may choose to add for service providers’ attention.
Work is under way on formulating, developing, and implementing RHIOs (such as the Connecting for Health Initiative discussed above) and PHRs as components of the NHII. The National Committee on Vital and Health Statistics has received testimony on the new types of privacy challenges that will be generated by the NHII and on how these challenges should be addressed (Newman, 2005).
As discussed in Chapter 5, much M/SU health care is delivered by or through agencies not typically considered part of the health care sector. In particular, the education system delivers the majority of mental health services to children. The welfare and criminal justice systems also are involved in the delivery of much M/SU health care. How are services delivered in schools to be captured in the NHII? Will the NHII capture data only on services that generate a claim or encounter form? Should schools have access to the clinical information on the NHII about their students? What special confidentiality provisions might apply to children served through the welfare system? Can or should the welfare system have access to data on the NHII? These and similar questions need to be addressed in the design of the NHII so it will capture the data needed for effective care coordination while protecting patient privacy.