A team led by the American Sleep Apnea Association (ASAA) has been approved for a funding award by the Patient-Centered Outcomes Research Institute (PCORI) to develop and expand a health data network that will be part of PCORnet: the National Patient-Centered Clinical Research Network. The Sleep Apnea Patient-Centered Outcomes Network (SAPCON) data network is one of 29 that were approved for a total of $93.5 million from PCORI on December 17 to form this new national resource that aims to boost the efficiency of health research.
PCORI envisions PCORnet to be a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research (CER). By integrating data available in the 29 individual networks, PCORnet aims to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs. It will reduce the time and effort needed to launch new studies and focus research on questions and outcomes especially useful to patients and those who care for them.
Moreover, PCORnet will join together networks operated by both patient communities and health systems and will require patients’ and other stakeholders’ involvement in all aspects of the collection and use of the data. By enabling researchers and patients, clinicians, and other end users of study results to interact directly and jointly determine research priorities, such as the selection specific studies to support, PCORnet aims to advance the shift in clinical research from investigator-driven to patient-centered studies.
During the next 18 months, the ASAA-led team will use the PCORI funds to expand and improve its systems, work to standardize its data, and be part of the process to develop policies governing data sharing and security and protection of patient privacy. It also will refine its network’s capacity to engage and recruit patients and other stakeholders interested in participating in research.
The team is led by principal investigator Susan Redline, MD, MPH, Peter C. Farrell Professor of Sleep Medicine, Director of Programs in Sleep and Cardiovascular Medicine, Brigham and Women’s Hospital and Beth Deaconess Medical Center, Harvard Medical School, and member, American Sleep Apnea Association Medical Advisory Council. The team includes several partner organizations: The CTSA Sleep Research Network and Harvard’s i2b2/Shared Health Research Informatics Network (SHRINE) .