In addition, they had to organize and view their
information within the context of their health situations
in ways that went beyond the support of generic
PIM tools. For example, a common method they used
to organize their information was by phase of care,
grouping their cancer experience around where they
were in the treatment process (such as surgery,
chemotherapy, radiation, or hormonal therapy). Similarly,
they organized information by prominent
events that will or that have already occurred during
their treatment; the most common were consultations,
treatment episodes, and personal events with
implications for their cancer care.
They were frustrated by their inability to manage it
all, particularly because they received important information
in multiple settings (such as at work, at home,
and at the treatment center) and through a variety of
communication modalities (such as in person, on the
phone, via email, and on paper). The difficulty they
reported is troubling, given the importance of these
activities to their clinical care. In particular, for a few
of them who could effectively share information with
clinicians, we documented instances where they
detected or prevented medical errors from occurring
during that care [12]. But without tools to facilitate
such information management and sharing, many
might miss their own error-prevention opportunities.