Details and Information
Visit the SAPCON Website and join SAPCON
Areas of Focus: Sleep Apnea
Population Characteristics: Adults and children at risk for sleep apnea or with diagnosed sleep apnea.
Organization: Brigham and Women’s Hospital
Contact: [email protected]
Principal Investigator: Susan Redline, MD, MPH
The Sleep Apnea Patient Centered Outcomes Network (SAPCON) was founded to engage patients in all aspects of the design, implementation, and dissemination of research aimed at improving the screening, diagnosis and treatment of sleep apnea. In doing so, we aim to ensure that issues such as patient preference, treatment burden and adherence, and patient-centered outcomes are addressed during all phases of the research project. Patients, researchers, clinicians and other stakeholders have co-developed an on-line community that balances patient and community engagement with the needs associated with collecting high quality research data and ensuring that privacy is protected.
Network members include all stakeholders in sleep apnea: patients, family members of patients, healthcare providers, researchers, and members from industry.
Over 8,600 individuals are enrolled in our network, including people from all 50 states and 41 countries. Approximately 44% of members are women. A major concern of members relates to the barriers that delay diagnosis of sleep apnea. In fact 34% of members with sleep apnea report that sleep apnea was not diagnosed for more than 10 years after symptoms began. A second major concern is lack of information provided to patients on the full range of treatment options for sleep apnea treatment.
SAPCON actively engages a broad group of patients, researchers and clinicians from across the globe in designing research (such as new tools for understanding the basis for delayed diagnosis) and for enhancing educational materials. It actively collaborates with the Society for Women’s Health and is currently co-developing web-based tools to improve sleep apnea recognition among women and primary care physicians.
SAPCON’s Steering Committee is co-led by a patient and sleep researcher and includes a majority of patients. A multi-stakeholder panel meets monthly and additionally works within subcommittees to advance the goals of the Network. The broader goals are overseen by a Steering Committee, composed of a majority of patients.