‘Sleep is the glue’
WASHINGTON – There’s no magic pill for sleep apnea, but education, research and patient empowerment go a long way toward improving quality of life, says Adam Amdur, who was recently named COO of the American Sleep Apnea Association (ASAA). Amdur, a sleep apnea patient himself, recently spoke to HME News about why the nearly 25-year-old association is making itself more patient-oriented and participating in a new research endeavor, myapnea.org.
HME News:One big change for the ASAA is that it is working with the Patient Centered Research Outcomes Institute (PCORI). What’s that about?
Adam Amdur:We are tasked with being one of 29 networks (representing) 29 disease states to build a national network for research. This will take the silos out of health care and put patients, especially those with chronic conditions, in control. We’re co-recruiting with heart, diabetes, COPD and mood disorder groups—we finally get to link with other comorbidities—and sleep is the glue that binds them all together.
HME:What is an example of what the research is measuring?
Amdur:It’s not necessarily comparing the red pill to the blue pill, but maybe the red pill to the CPAP machine or the CPAP machine to the oral appliance. We are looking at patient-reported outcomes, not by claims info but by quality-of-life outcomes.
HME: Patients can enroll through myapnea.org?
Amdur: That’s where they can sign in and register. They can dive in deeper if they want to get involved in clinical trials, or just participate in surveys or uploading CPAP data—there are different levels and forms of consent. We want to make it as easy as possible for a DME provider to say, “You really can learn a lot here, not only to help yourself help but also future generations.”
HME: What’s the ultimate goal of the research?
Amdur: We would finally have large data to prove that if you give these patients help, education and guidance in the first weeks, the adherence goes up. Then we can say to CMS it’s time to make sleep apnea education reimbursable like diabetes education. We want our patients hand-held and this is what the industry needs. If they are getting squeezed on reimbursement for the machines, this is another revenue source.