Page 76 - Health Literacy, eHealth, and Communication: Putting the Consumer First: Workshop Summary

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

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troubling, he or she can call the Shared Care Plan office and ask the staff
there to look into the situation. Shared Care Plan staff can also audit
the entire database, which is not available through user interface. If a
patient alerts staff to a problem because a name appears on the audit
trail that the patient does not recognize, staff can go into the database
and re-create what happened. No editing activity is ever deleted.
Although there are some nice front-end privacy controls in the Shared
Care Plan, there is not, as yet, a policy that discloses who has access to
the back end of a PHR; is it 5 people or 100 people? With a definite policy
in place that discloses this type of information, patients would be better
able to make determinations about how secure the back end of a PHR
system is.
In addition to challenges surrounding privacy and security, there
have also been challenges involving health literacy. There is a great deal
of accumulated wisdom available from patients who have navigated the
health care system. The features and functionalities of the Shared Care
Plan were designed based on the tasks that engaged patients are perform-
ing. But how does one explain these features and functions to someone
who is interacting with the health care system for the first time? The con-
cepts in, for example, managing a medication list are extremely complex.
Designers spent a great deal of time on the medication list because there
were a large number of things that patients needed to understand and to
do, but there is a real problem in preparing new participants to compre-
hend these concepts.
The Shared Care Plan was developed specifically for a chronic-disease
population. Once it was turned into a more general personal health record
the target audience expanded and the need for meeting patients at their
own knowledge level increased. One thing that has been done to mitigate
the problem is giving patients the choice to deactivate sections in the
Shared Care Plan that they find they are not using. For example, there is
a goal-setting/next steps section that chronic-disease patients find very
useful but that someone who is healthy and just wants to have a record
may not need to use.
The platform approach may be one way of managing this problem.
With HealthVault, Microsoft is constructing a basic platform that allows
people to build tools that can then be plugged into the platform. This
avoids the problem of each group having to do all the work of designing
and building the functions of the platform over and over again. In the
future, it is likely that there will be a greater variety of tools which serve
many different audiences and which can be built more quickly and then
plugged into HealthVault.
Many individuals have never heard of a personal health record. To
educate potential users, drop-in labs were organized that allowed people

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