Sleep apnea affects 17% of adults and 1-4% of children with consequences that range from sleepiness, attentional deficits, behavioral problems, depression, and impaired quality of life to hypertension, diabetes, myocardial infarction, stroke, and early mortality. Minority and disadvantaged groups have increased risk for sleep apnea, yet are less likely to receive effective treatment, thus contributing to health disparities.
Though much has been learned about the epidemiology and pathophysiology of sleep apnea, management of the disease is often disjointed and suboptimal. Use of diagnostic tests (home or lab-based sleep studies) is more often influenced by the patient’s insurance than by clinical factors or patient preference. There are a variety of treatment options (devices, surgeries, medications and behavioral interventions) but little data to inform which treatments, or combinations of treatments, work best in given patients. Traditionally, treatment has focused on improving a sleep test result rather than improving patient-centered outcomes such as quality of life. Achieving optimal adherence to sleep apnea treatments can be challenging and adherence research is needed that is guided by patients’ input. Behavioral approaches such as modifying diet, physical activity, and sleep patterns also are typically not systematically addressed; research is needed to identify best approaches for integrating multi-pronged behavioral approaches into clinical medicine that improve sleep, health and well-being.
To address these gaps, SAPCON will facilitate critically important comparative effectiveness research while actively engaging patients with sleep apnea and other key stakeholders in every aspect of research, dissemination, and implementation. The SAPCON is a collaboration of the American Sleep Apnea Association (ASAA), the nation's sole sleep apnea patient-centric organization, with major research and clinical partners that include Brigham and Women’s Hospital Division of Sleep Medicine, Harvard’s Informatics for Integrating Biology & the Bedside / Shared Health Research Informatics Network, and the Centers for Translational Science Award Sleep Research Network.
Together with other PCORnet partners, the SAPCON will recruit and actively engage 50,000 patients with sleep apnea using a broad strategy that includes social media and clinic-based recruitment from diverse medical centers. It will bring patients and their families from across the Unites States together, linking them to researchers, clinicians, and to each other to identify those questions regarding screening, prevention and management most relevant to patients. A patient- friendly web portal built using open-source and robust tools will provide each patient with a dashboard for contributing health information, coupled with powerful visualization and aggregation tools for viewing and monitoring their own health data and aggregated data from others. Blue button technology will be leveraged and piloted during initial stages to create a standardized, interoperable, and scalable network model using national standards of clinical data exchange that will support patients in gaining access to and controlling flows of their health information. The portal also will provide a centralized, easily accessible resource that supports comparative effectiveness research.
^ Susan Redline was affiliated with the American Sleep Apnea Association when this project was funded.