Page 77 - Health Literacy, eHealth, and Communication: Putting the Consumer First: Workshop Summary

Health Literacy, eHealth, and Communication: Putting the Consumer First: Workshop Summary

HeALtH LiteRACY, eHeALtH, AnD CoMMUniCAtion

to sit with an expert who provided hands-on attention while the users
worked through the system. To build awareness, presentations were given
at such locations as community centers, senior centers, and churches.
Once a few people became excited about the Shared Care Plan they acted
as ambassadors, talking with friends and family, and spreading the idea.
This was a very successful way of spreading ideas and getting people to
sign up.
The final challenge is management of patient expectations. This is
incredibly difficult. It takes a great deal of explaining to get people to
sign up for the personal health record. Once they sign up, they are very
pleased to find they can add any of their clinicians in the community to
their care team and set the access level for each person. But once they
have done this, they tend to expect that the clinicians will be constantly
logging on to the PHR to record and access information. Not all clinicians,
however, entirely engage in using the system.
Patients also expected to be able to log in to the system and imme-
diately have all of their health care records electronically available for
them to download into their personal health record. But as Marchibroda
mentioned, only a small percentage of physicians use electronic health
records. Thus, it was necessary to work with patients to explain the limita-
tions and to temper their expectations.
Another common patient expectation was that a critical mass of clini-
cians would be engaged. It is a great deal of work to fill out the Shared
Care Plan and it is even more work to maintain it. Patients were lucky if
one of their clinicians was a participant in the Pursuing Perfection Proj-
ect. A large number of patients did not have any officially participating
clinicians which meant they did not see their clinicians participating.
Unfortunately there were a number of stories of patients taking their
printed Share Care Plan to a clinician visit, even the wallet-size version,
only to have the clinician completely disregard it, even throw it into the
trash can in one extreme case. Imagine the effect that had on the patient’s
perception of the value of filling out the large amount of information in
the Shared Care Plan.
Patients will understand the value of PHRs only when they start
actually seeing them significantly improving their experiences within the
health care system. (e.g., not repeating their medication lists verbally, not
having to fill out repetitive forms, etc.). In other words, patients won’t
value PHRs until their own clinicians value and use them.
Recently, emergency medical services (EMS) in Whatcom County
have decided to participate with the system. Ambulances have installed
wireless Internet, and now EMS has the ability, when receiving a 911 call,
to cross-walk the telephone number with a patient’s Shared Care Plan,
if there is one. If the patient has given the community clinicians ability

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