Our studies of breast cancer patients also revealed
a need for additional information management
beyond that found in general PIM studies. In particular,
they expressed the desire to share aspects of their
personal (as well as health) information with others
and frustration at their limited ability to manage the
related information exchanges. They routinely made
trade-offs between the efficacy of immediate communication
about private health information in a public
setting and their desire to maintain their personal privacy;
for example, they needed to talk to their insurance
companies to obtain authorization for special
services or with their clinicians to obtain test results or
schedule appointments. However, these communications
usually could occur only by phone, during
working hours while they were in semipublic work
settings (such as cubicles). They emphasized the
importance of, and frustration with, detailing their
interactions with clinicians, tracking unaddressed
health issues, and maintaining a running list of questions
and concerns.