The promise of big data: Research needed to provide value to patients with sleep apnea
A new web-based community portal, www.MyApnea.org, is mobilizing the largest community of patients and researchers ever created to work together to identify better ways to screen, treat and prevent sleep apnea. MyApnea.org is the public face of the Sleep Apnea Patient Centered Outcomes Network (SAPCON), one of 18 patient-powered research networks to improve comparative effectiveness research by focusing on patient-centered outcomes. This type of research asks: Of available treatment alternatives, which treatments are most effective, and for which patients? The Patient-Centered Outcomes Research Institute (PCORI) has established PCORnet, the National Patient-Centered Clinical Research Network which engages patients, care providers, and health systems in collaborative partnerships to develop platforms to efficiently conduct such fundamental research. Within PCORnet there a number of Patient-Powered Research Networks (PPRN’s), focused on specific health conditions such as sleep apnea (MyApnea.org), that combine the complementary knowledge and insights of patients, caregivers, and researchers to help guide research that identifies effective and personalized treatments.
There has never been a more urgent time in sleep medicine for patient and stakeholder participation in such a national comparative effectiveness research initiative. It is estimated that only a fraction of health care decisions are supported by research data. With escalating health care costs, payers are demanding higher levels of evidence to justify the use of diagnostic tests and treatments and are asking for data that provides value to the patient and health care system. Many insurers restrict how sleep tests and treatments are delivered; however, those requirements often reflect a generalization of data from studies that were conducted at highly specialized referral centers and were not intended to be used without the support of a full team of committed sleep health professionals. Technological advances currently present numerous exciting opportunities for improving sleep apnea diagnosis and management. Examples include telemedicine, newer ambulatory monitoring devices, mHealth devices, and sophisticated oral appliances, pressure devices, and airway neuromuscular stimulators. However, without good evidence on what works best, such technologies can be misused.
MyApnea.org is inviting people with (or at-risk of) sleep apnea to share information, provide support, and to help design, direct and participate in sleep research. A broad and collaborative effort is what is needed to generate the evidence necessary for deciding which diagnostic studies and treatments are most effective. Studies of large numbers of individuals from across the U.S. (and the world) are needed to achieve the sample sizes necessary for identifying which patients benefit most (or might be harmed) from specific treatments. Rather than the traditional “one size fits all” approach to medicine and research, MyApnea.Org and PCORnet hopes to use information on health risk factors, biomarkers, background and type of sleep apnea to tailor treatments that are likely to be most effective for individual patients. In such a way, a patient with a given set of risk factors (based on airway size, body fat distribution, time in REM sleep, etc.) would be offered treatments most likely to benefit him or her. Furthermore, research that addresses the outcomes that matter to patients (e.g., fatigue in women, behavioral problems in children) will ensure that the results are relevant and would improve the health and well-being of patients with sleep apnea.
Network members of MyApnea.Org have the opportunity to complete a series of health related surveys, nominate and vote on research questions and can participate in forums to discuss how such research should be conducted. Through these research communities members can identify what questions are most important and can co-develop proposals with health care providers and scientists to address these needs. It is now easier than ever for people with sleep apnea to play an active role not only their health care but in the research that is driving the decisions behind their health care. This is ever so important in the area of sleep health where the persisting gaps in knowledge are a significant determent to equitable health. MyApnea.org, already has enrolled more than 4.000 members in this national effort. If you have been diagnosed with sleep apnea or know someone who is, encourage them to join the patient-powered research network MyApnea.org. Your data has the power to move the dial in sleep health.
Emily Kontos, Sc.D., Sc.M., is a research scientist and the Assistant Director of Research, Division of Sleep Medicine, at Brigham and Women’s Hospital.
Susan Redline, M.D., MPH, is a professor of sleep medicine at Harvard Medical School, and directs programs in sleep and cardiovascular medicine and sleep medicine epidemiology in the Division of Sleep and Circadian Disorders at Brigham and Women's Hospital.