Adam,
I appreciate that you've stayed engaged in this discussion as long as you have, but you seem to be sidestepping around an important concern being raised here by the cpaptalk community about the myapnea.org project. The concern is about the ASAA's longstanding position on patient self-management and whether the myapnea.org project holds any real promise for progress on that front.
According to Ed Grandi's announcement on the ASAA forum,
myapnea.org is an ASAA project funded by a grant from PCORI:
A team led by the American Sleep Apnea Association has been approved for a funding
award by the Patient-Centered Outcomes Research Institute (PCORI) to develop and
expand a health data network that will be part of PCORnet: the National
Patient-Centered National Clinical Research Network.
What many of us are trying to ascertain is how the ASAA can on the one hand be claiming to promote patient-powered research and meaningful change with the myapnea.org project while at the same time it is opposed to and actively blocks dialogue about the need for patient education and empowerment in the management -- including and especially self-monitoring and self-management -- of sleep apnea. It is a glaring contradiction.
About a year ago I posted a message on the ASAA forum about how my sleep doctor at the time had suggested that I could make adjustments to my pressure as need be. In my post I did not discuss how to make adjustments or even suggest that anyone else make adjustments. A number of others started to join that discussion. It was exactly the type of dialogue that if allowed to flourish could, over time, become a catalyst for new directions in "patient-powered" research and meaningful change. After all, the ASAA is the premiere sleep apnea association. But within one day Daniel and Linda shut that thread down, calling it a "diatribe" and protesting that "it does nothing to help." This is the thread:
http://www.apneasupport.org/sleep-medic ... 32714.html Linda locked the thread before I could even respond to Daniel's question about why I wanted the ASAA to see my message.
This is not about you personally, it is about the organization you represent. "Patient-centered" and "patient-powered" are troubling claims coming from the very organization that will not tolerate hearing patients' voices about what they really need in order to effectively manage this serious medical condition. There is a basis for the cynicism you're encountering here (though there is really no basis for the snarkiness toward you as an individual). I don't think anyone here would deny that the ASAA provides needed and valuable services and resources. But the stifling of patient dialogue about learning how to responsibly manage one's PAP therapy (just as diabetes patients learn to responsibly manage their treatment on an ongoing basis) is not only frustrating but harmful, as so many patients left to the mercy of the current healthcare system and apathetic providers simply drop out of treatment.
So does the myapnea.org project really represent a fundamental change in the openness and interest of the ASAA in listening to what patients are asking for? If someone starts a discussion on the myapnea.org forum about the merits and importance of patient self-management -- including education about appropriate "dose" (pressure) adjustments -- will that discussion be censored as it has been on the ASAA patient forum?