Participants not only mentioned but also critiqued the usefulness of various websites, comparing their preferences and experiences across sites. They noted that some sites should not be considered reliable sources of information and that some were commercially supported, although not necessarily unhelpful. Receiving information from medical providers was also discussed. Participants were critical of doctors who do not share information or who tell their patients “do not bother” to read about drugs and their side effects. One told a story of having a serious illness years ago and being given three treatment options from which to choose. “These days I’d have more questions, would do a lot of research, (you) cannot rely on the doctor.” Another added that some doctors do not like it when you do your “homework” but that you are smart to do it anyway. Group participants commented that they generally found packaged health-related information too general and that they were not specific to an individual situation. One participant said he had never been given a decision aid, but if he had, he would like it to be presented as a decision tree that had yes-no branches. The value of hearing others’ experiences with the same problem, whether through blogs, support groups, or with family and friends, was enthusiastically endorsed. “They understand” participants noted, in a way that others who have not had the experience cannot. |