Big Data

Night Terror: Let’s Put the Spotlight on Sleep Health

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It’s often said that sleep apnea is a silent killer, and, for my family, the side effects have been devastating. My father had triple-bypass surgery at age 38, later got vascular dementia, and died at age 62. His father died of heart disease in his 60s. My other grandfather died of a heart attack at 61. It seems likely they all had this sleep disorder—and that it contributed to their early deaths.

Sleep apnea is estimated to affect as much as 10% of the adult population, but I believe many more people may suffer from it who have not yet been diagnosed. While sleeping, the disorder is characterized by restlessness, choking, and pauses in breathing; during the day, by headaches and lethargy. Untreated, it can lead to high blood pressure, heart disease, stroke, diabetes and accidents.

I have suffered from this “night terror” since I was in my teens. In school, I was exhausted all the time. In my 20s, I fell asleep at the wheel of a car while traveling at 50 miles per hour, drove through a gas station, and, miraculously, missed the pumps. Sleep apnea made it difficult for me to hold down 9-to-5 jobs and, even with treatment, the disease has caused so much accumulated damage that I’m a young man (41) in an old man’s body.

As the chief patient officer of the American Sleep Apnea Association (a volunteer position) and the parent of a daughter who inherited my sleep apnea, I’m dedicating my life to shining a spotlight on this plague. I intend to disrupt the status quo so people like me can get the treatment we need, physicians are better able to recognize and treat the disease, and the medical establishment, including researchers, makes more rapid progress in understanding its causes and effects, and helps to develop more effective and patient-friendly treatments.

That’s why I am extremely pleased to be one of the creators—and beta testers–of SleepHealth, a study and mobile app that will help both the medical community and patients to better understand the link between sleep and general health. The ASAA has long advocated clinical trials and studies so we can learn more about sleep apnea, but the SleepHealth study and app represent a radical new approach to sleep research—or research into any medical field, for that matter. So I feel like we’re doing something that could have a huge impact on peoples’ lives.

SleepHealth is a collaboration between the ASAA, researchers at the University of California at San Diego, and IBM. The app was built using ResearchKit, an open source framework designed by Apple. With user permission, all personal health information gathered through the SleepHealth study can be securly stored via the Health app on iPhone. All the data is being stored in Watson Health Cloud, where it can be analyzed using a variety of tools, including Watson cognitive technologies. Carl Stepnowsky, the principle investigator at UCSD, is conducting the study and will publish the results.

If you’re interested in downloading the app, click here; and in learning more about the study,  click here.

In my role as a beta tester for SleepHealth, it has become an essential part of my daily routine. I began by responding to a series of short surveys about my life, my health and my sleep patterns that were posed to me via my Apple Watch. The initial surveys were scattered over a 7-day period so they weren’t too burdensome. Now, each day, I’m prompted by the app to fill out brief surveys about what’s happening to me and how I’m feeling overall. I also get practical tips on how to improve my sleep health.

These days, most clinical trials are conducted using old-fashioned methods for both gathering and analyzing data. Researchers often struggle to find even a few dozen people to participate in their studies and the participants are passive subjects who have no say in how the studies are designed and conducted. They answer a bunch of questions, perhaps get a fee, and they’re gone.

SleepHealth is completely different. It’s a patient-led study, meaning people who suffer from sleep apnea like me helped design it. The app will likely get 40,000 people enrolled, and thus get more comprehensive results. We’re reaching out to sleep apnea sufferers and others through social networking to create an information-sharing community—so people will readily join the study and stick with the program. As a result of these changes, SleepHealth represents a reinvention of the way medical research is done. We’re transitioning from patient-centered research to patient-led research.

My sleep apnea was not diagnosed until six years ago despite seeing an array of physicians from allergists to pulmonary specialists to psychotherapists throughout my childhood and early adulthood. It was not until one of my oldest friends, who had just graduated from medical school, heard me snoring and witnessed me nodding off during the day that the source of my many symptoms was discovered. He urged me to get a sleep evaluation. When I finally did, the people conducting it halted the test after 20 minutes because I stopped breathing 78 times. My apnea was that severe.

Today, I use a positive air pressure machine. I’m typically sleeping 8 hours per night—and it’s quality sleep. I wake up some days with so much energy I feel like I’m being shot out of a canon and my overall health has improved dramatically.

In spite of suffering from severe sleep apnea, I feel like I’m a very lucky man. I have a supportive family, effective treatments, and I’m dedicating my life to improving my daughter’s sleep health and raising awareness for millions of people who deal with chronic sleep problems. My goal is nothing less than getting sleep recognized as one of the pillars of good health—along with diet, exercise and prevention.

Chief Patient Officer, American Sleep Apnea Association (ASAA)

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