Page 70 - 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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• give patients access to their clinical information from multiple
community health care systems so that they may organize it into a
single meaningful lifelong personal health record and then make
appropriate parts of that record available to those who need it at
the patient-owner’s discretion.

The second goal may be of particular interest to those attending this
workshop because of its health literacy aspects. The idea behind the goal
is that if patients could be encouraged to use the Shared Care Plan, even
if they did not understand everything they encountered, not only would
their health literacy increase but, if their Shared Care Plan was up to date,
they would be in a good position to deal with any issues that might arise
in their health care.
There are currently more than 1,400 Shared Care plans in Whatcom
County. There are also a couple of pilot sites in Oregon. The regions in
which the plans are being implemented are the PeaceHealth regions.
Patient involvement was key to development. The user-centered
design approach is more than just a methodology; it is a philosophy and
a process in which the tasks, needs, wants and limitations of the end user
of a system (in this case, the patients) are given extensive attention at each
stage of the design process.
Jakob Nielsen (2005) developed the following key end-user principles
or “rights” for user-centered design. First, people should be considered
superior to technology. While that may seem obvious, there are those
involved in technology development and programming who may some-
times need to be reminded of this. Second is the right to empowerment.
Third, users have the right to simplicity, that is, to have things that are
well-designed, easy to use, and designed to complete the task one needs
to complete, not someone else’s idea of what one needs to complete.
Finally, people have the right to have their time respected. One can waste
a great deal of time using poorly designed technology. Such technology
is very frustrating and can be intimidating.
Through an approach called user research, system designers working
on the Shared Care Plan project set out to determine what tasks patients
were actually attempting to accomplish. They observed, they listened to
patients tell their stories, and they asked questions about why patients
did things in a certain way. Several approaches were used to gather infor-
mation including one-on-one contextual interviews, usability testing of
design ideas and prototypes, patient focus groups, and surveys.
A very popular approach is the use of focus groups. It is important in
such groups to make sure you have a range of representation including

• patients who most successfully navigate the health care system;

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