Adam's comments here were in reference to my post earlier in this thread about trying to start a conversation about patient self management on the ASAA forum last year. That thread was locked down just a day after it started by moderators Linda and Daniel. This evening I discovered that the thread has been unlocked: http://www.apneasupport.org/post214943.html#p214943 .asleep@thewheel wrote: Ed Grandi is now the former executive director of the ASAA.
Linda and Daniel are no longer our moderators. Yes we are open to have this exact conversation about patient self management. It has taken the diabetes community a long time to get diabetes education into their process.
Adam, if you had a part in getting the thread unlocked I thank you. It is important that we be able to discuss and debate the merits of patients learning how to better manage their own PAP therapy, even if the ASAA board still prohibits direct suggestions or advice on how to make pressure adjustments, etc.
I hope this development represents a small step in the direction of progress. When patients have knowledge, competence and at least a degree of personal responsibility/autonomy, they are much more likely to be successful with PAP therapy. We see it daily here.
Regarding the research question I tried to submit at the myapnea.org website -- I received an email from Darrel Drobnich, Project Director, Sleep Apnea Patient Centered Outcomes Network saying that there have been some website/server issues but that he'd see to it that my question gets posted. I'll watch for it.