Internet can be helpful partner for patients with rare diseases
Technically Speaking. By PAMELA LEWIS DOLAN, amednews staff. Posted Apr 25, 2011.
Many studies have found that the majority of adults in the U.S. have consulted the Internet for answers to health questions. But a study by the Pew Internet & American Life Project found that the most prolific Internet users are those with rare diseases or those caring for someone with one.
Experts say the study offers lessons to physicians in how the Internet can help gather information and support all patients during difficult times, not just those with rare diseases. It also shows physicians the help and advice patients expect from them, and what care they prefer to seek elsewhere. Although those with rare diseases spend the most time online, Internet use trends are similar for all people and should be considered by physicians when dealing with all patients, experts say.
In the February study "Peer-to-Peer Healthcare," Susannah Fox, associate director of the Pew Internet & American Life Project, wrote that one in five Internet users has gone online to find other people with similar health concerns. More than half of those surveyed who have a rare condition said they turn to others with the same condition for advice and support. For the majority, the interaction takes place online.