These patients dedicated valuable time and energy,
sometimes to the point of exhaustion, to sharinginformation with family, friends, and colleagues.
Some employed a broadcast strategy (such as email
lists) to minimize the effort of distributing information
broadly to their social networks. Unfortunately,
those using this strategy could not moderate the information
exchange for different relationships within
their social networks. Others adopted more personalized
communication strategies (such as phone calls
and individual email) to customize and filter information
exchange with different people.
Those using them enjoyed more privacy by maintaining
control over information exchange but confronted
two imposing barriers: First, during periods of
change in their health situations, most could not meet
the demands of their social networks for customized
information. Second, the strategies were not scalable to
large social networks. The patients struggled with the
trade-off between sharing information broadly vs.
maintaining privacy by spending more time tailoring
information to each person.