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and federal law. Data stewardship and the control of medical records
are written into state and federal laws that specify the requirements of
record storage, record protection, and the limits of record sharing. Federal
laws, such as the Health Insurance Portability and Accountability Act
(HIPAA), Family Educational Rights and Privacy Act (FERPA), and the
Public Health Services Act contain strict guidelines for maintaining the
security and privacy of records and provide for penalties in the case of a
breach that releases records improperly. HIPAA limits the transfer and use
of patient records for treatment, payment, and operations only. HIPAA
allows physicians to exchange medical records with another physician for
treatment purposes, but also allows patients the right to “opt out” of shar-
ing their records. While HIPAA was enacted to facilitate the exchange of
medical records, healthcare providers sometimes misinterpret its intent
and use it to limit access to their records.
Most states also have statutes that protect specific classes of records, such
as mental health notes, HIV information, and drug abuse treatment, requir-
ing physicians to obtain patient authorization before transferring them to
another physician. While both state and federal laws set constraints on the
exchange of a patient's medical records, state laws prevail when these laws
are more strict than HIPAA. Some state laws require the patient to actively
“opt in” by authorizing the transfer of records over a health information
exchange, while other states endorse the “opt out” approach.
These two issues of opt in versus opt out of record exchange form a
major challenge for the governance of health information exchange and
for setting exchange policies (Goldstein and Rein, 2010). To make things
more complex, some states have addressed the issue through statute,
others through administrative rules, and others through the subscription
agreements for joining the health information exchange. The lack of con-
sistency of medical record laws from state to state is a challenge to gover-
nance of health information exchange and one factor in the variance of
governance models across the states (Pritts et al., 2009).
Value of HIE Governance in Bridging Public and Private Sectors
The HIE governance organization, be it the state-designated entity or
some other organization, plays a critical and valuable role in bridging
the interests of the state with those of private sector healthcare providers.
Each state in the HIE Cooperative Agreement Program is taking its own
approach to establishing the HIE governance model to oversee health
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