NeHII tracks opt-out requests by
provider location to address any
need for further staff education.
mittee and the operational team. Training was provided at data
provider sites to ensure that consumers would be provided with
adequate information to make an informed decision regarding
access to their data. Patients were provided with multiple options at the point of care to modify their consent status. When
the pilot ended in June 2009, the opt-out rate stood at a low 1. 3
How the Process Works for Patients
Today, each time patients visit providers participating in the
NeHII network they are given the opportunity to change their
consent status. Patients receive an educational brochure containing a form they can complete if they elect not to participate.
Additionally, individuals can visit the NeHII Web site or call the
support line at any time to opt out.
Regardless of the method, all requests are routed directly to
NeHII system administrators. Once received, the opt-out is processed within one business day, placing a block on the patient’s
NeHII retains access to minimal patient demographic information, but no clinical information or further personal data
are accessible. The small amount of data that remains visible—
name, gender, birth date, and consent status—allows physicians
to effectively and accurately search for patients to determine if
their data are accessible in NeHII.
How the Process Works for the HIE
Each Friday NeHII mails a confirmation letter to all individuals who have opted out during the previous week. The letter
confirms their opt-out status and provides information regarding NeHII and the benefits of participation. Also provided are
instructions on how the patient can reverse his or her consent
status. Patients who decide to opt back into NeHII are called at
the phone numbers on record to confirm that they do indeed
intend to opt in. Once NeHII staff confirm the request, the patients are mailed a letter of confirmation.
NeHII tracks the reasons consumers give for their status
changes. Sometimes patients inadvertently opt out, mistakenly
signing the opt-out form as they work their way through the
score of other papers they must complete.
In some cases, patients opt out because they do not fully understand the benefits of HIE or the precautions that are taken to
protect patient information. Because staff at the provider sites
are the primary people through whom patients learn about the
HIE, their rights, and its benefits, NeHII tracks the opt-out requests by provider location so that communications specialists
can address the need for further education. Staff turnover at the
provider sites warrants regular training to emphasize the importance of informing patients of their rights and the benefits
Adding to the complexity is the fact that providers use a variety of office workflow processes for obtaining opt-out requests,
none of which are mandated by the HIE. Different methods
work for different providers, but NeHII must help each facility blend HIE awareness and education into the workflow in a
way that results in a patient’s full understanding of the impact
of their consent choice and, importantly, how to communicate
Given the Chance, Few Opt Out
Since NeHII became operational in 2009, the percentage of patients electing to opt out has ranged from 1. 5 to 2. 6 percent. Of
those who have opted out, approximately 7 percent elect to opt
back in when provided with further education about the HIE’s
benefits, security, and how information is accessed and used.
A patient’s ability to allow or restrict access to his or her records is only one side of the consent model equation, however.
Increasingly, providers are seeing the benefits of, and incentives
for, sharing more information with patients.
The meaningful use EHR incentive program requires that providers participating in the program give patients greater access
to their health information. In January of this year, the Health
IT Policy Committee released a preliminary draft of stage 2
meaningful use criteria. One proposed objective would require
that 80 percent of patients are offered the “ability to view and
download via a Web-based portal, within 36 hours of discharge,
relevant information contained in the record about inpatient
4 Providers that participate in an HIE could turn to
the network to provide such services.
Ten years ago, HIPAA granted patients new rights over their
health information. Now in 2011 HIEs and their providers grapple with how to provide vital and sensitive information safely
and securely to a demanding and discerning public. ¢
1. eHealth Initiative. “The State of Health Information Exchange in 2010.” July 2010. www.ehealthinitiative.org. (
Access restricted to members.)
3. Department of Health and Human Services, Office of the
National Coordinator for Health Information Technology. “The Nationwide Privacy and Security Framework for
Electronic Exchange of Individually Identifiable Health Information.” December 15, 2008. http://healthit.hhs.gov.
4. Heubusch, Kevin. “HITPC Floats Preliminary Stage 2
Meaningful Use Criteria.” January 12, 2011. Journal of AHIMA. http://journal.ahima.org/2011/01/12/hitpc-floats-
Deb Bass ( email@example.com) is executive director of the Nebraska Health