Den, DSM, thanks for the kind words. It's great to see the forum just as active and busy as ever.
Guest wrote: SWS, What great gains do you think it could make?
Guest, as a rule of thumb any potential for gain is defined by needs or voids that must be met. So your question might best be answered with yet another question: are there any patient needs or voids related to CPAP therapy that are presently unmet? I think the answer to that question is perhaps best derived by looking at those recurring problems related to CPAP therapy that patients have posted again and again throughout the years---and continue to post. Couple those same recurring problems with CPAP’s low compliance rate, and an inescapable conclusion begins to form that there is something terribly wrong with this big CPAP picture.
So what’s wrong with the current CPAP system and why? If that system is comprised of scientific researchers, manufacturers, health care practitioners, insurance companies, DME providers, and patients, then why do patients continue to lodge the same complaints and turn in such low compliance rates? In my opinion an important feedback mechanism is missing in that system. Ironically that missing feedback mechanism seems to be the patients themselves. They don’t seem to be effectively engaging the system as a feedback gear. It was already correctly pointed out in this thread that consumer dollars would have normally served as an effective feedback mechanism---but that this important consumer feedback mechanism (dollars spent) are most often replaced by purchasing arrangements between insurance companies and DME providers.
There are well-intended patient advocacy organizations that run under the auspices of researchers, health care providers, manufacturers, and DME providers. However, to my knowledge there are no patient advocacy groups that are purely driven by the patients and purely for the purpose of benefiting the patients. The other advocacy organizations all have “mutually beneficial” arrangements that in my opinion leave the vast voids that are presently unaddressed. The present system is clearly broken, and the present system clearly lacks an organized and effective feedback mechanism that is driven purely by patients’ interests. How many patients currently feel alienated by the system? How many patients feel as if their common/universal complaints are completely unheard? There is no effective patient feedback mechanism in the present system. If there was, many of these incessantly recurring problems that are presently outstanding would have been fixed over the years.
Talk about pipe dreams. I would also love to see a committee publish an annual “Sleep Apnea Patients State of Affairs” report that clearly outlined our most salient problems with respect to insurance, health care practitioners, therapies in general, you name it! I’d love to see an annual report like that disseminated to manufacturers, health and insurance institutes, all the major players in our presently broken system. I’d love to see that annual report not only define our most salient outstanding problems, but also track the progress, if any, for each of those problems made in the previous year. Now that’s a pipe dream.
To all those who would love to collectively engage the system in an organized and productive manner... I say engage!! And thanks.
