I have a question about the use of the ANA forum. I was wondering if the administrator ever removes posts? The reason this is important to me is I want to know if opinions are ever suppressed. I know this can be a tricky subject because there are so many factors involved. It brings up a lot of ethical questions and questions of netiquette. I personally have my own set of standards that I abide by, but I was wondering about this topic as it relates to other people's posts. Here's my concern: If a person makes a negative comment about the care they received at an Institution or by a physican, is that information ever suppressed? I guess this really matters, because many people on this forum are, in a way, looking for a recommendation about particular physicians and institutions, in the same way that you might ask a friend for a recommendation. I know it can be a tricky question, because a negative post might unfairly and adversely affect a physician's practice. I also know that physicians are constrained by HIPAA and cannot respond, which may be unfair to them. This is an important topic to me because I, and so many of us, seek consultation via telephone, and unless we visit the Institution in person, and make a one-on-one appointment with the physician, it can be very difficult to assess the quality of care of the physician and the Institution. It calls into question whether or not it is ethical to be recommended for surgery having never had a one-one-one consultation between patient and physician. However, due to the rarity of the disease, the telephone consultations can be helpful. They might also be misleading. So much cannot be determined via the telephone or remote communication. For example: the cleanliness of the facility, the friendliness of the staff, the care and compassion, location of facility etc. etc. I know that there is a disclaimer that the forum should not be used to obtain medical advice, but in some ways we are looking for information. I also know that the ANA does not endorse or recommend any particular physician, treatment, or Institution, but the forum is being used by participants to gain this information. My guess is that many of the treating physicians read the posts. I guess I would too if I were a doctor. Participants in forums are anonymous and therefore posts cannot be validated. There is no way to determine whether or not a post is valid, whether it is positive or negative about a physician or Institution. I caution all of the participants to be careful and not base their treatment decisions on what they read here. Do your due diligence, get multiple opinions, examine and cross-examine, ask for statistics and get opinions in person as well as by telephone. Remember, we are more that just an MRI scan. In the same way that it is difficult to obtain information about an Institution remotely, it is also difficult for a physician to have a "full picture" of a patient via remote communication.
The ANA does a wonderful job of providing patients with so many different webinars and resources. We are also very fortunate to have a wonderful Medical Advisory Board. The issue of whether or not the forum is censored is an important one to me. If posts are censored in any way it may obscure other users from having a clear picture of people's true opinions.
Could the ANA please clarify the use of the forum and how it is administrated?
