Sleep Apnea Patient-Centered Outcomes Network (SAPCON)
For patients with sleep apnea, a visit to the doctor’s office all too often consists of a review of test results and downloads, a brief physical examination and a change in PAP pressure levels or mask size. What’s missing from this? The patient. A new initiative seeks to put patients back at the center of medical care where they belong.
Dr. Susan Redline of Harvard University leads the Sleep Apnea Patient-Centered Outcomes Network, affectionately known as SAPCON. A key role in the development and function of the program is the Patient Engagement Panel, consisting of patients, families and experts from a variety of disciplines. Dr. Redline envisions the program reaching a large number of patients and leveraging social media technology to provide support, collect data, develop new patient-directed research priorities and help physicians address common concerns of sleep apnea patients.
The web site at the center of the program is myapnea.org. The web site asks patients to
register and complete several surveys. A priority of the program is to follow patients through the diagnosis and treatment process and compare outcomes. A Blog section on the website keeps participants up to date on developments in the diagnosis and treatment of sleep apnea. The Forum connects patients and professionals for crowd-sourced solutions to common and uncommon problems. Participation by a large number of patients will facilitate data mining and inform the creation of new research projects.
AAST September Journal Club
I recently had the opportunity to interview Dr. Redline and Dr. James Johnston (a Patient Engagement Panel member) for the September Journal Club. We reviewed the program and the preliminary results, which were published in a recent issue of the Journal of Clinical Sleep Medicine1. I was particularly interested in the Narrative section where patients tell their stories, something that the physician rarely has time to hear.
The program provides an opportunity for two widely divergent approaches to sleep apnea patients:
- focusing on the majority of patients and using big data methods to determine the critical pathways that provide optimal treatment
- focusing on outliers and unusual cases to explore the boundaries of OSA.
Sleep apnea research is often driven by scientists who need to manage funding from NIH or manufacturers, get significant results to advance their path to tenure and deal with a host of complications. SAPCON seeks to put patients in the driver’s seat. Where would they like the field to go? Encourage patients to enroll and we’ll find out.
1Redline S, Baker-Goodwin S, Bakker JP, Epstein M, Hanes S, Hanson M, Harrington Z, Johnston JC, Kapur VK, Keepnews D, Kontos E, Lowe A, Owens J, Page K, Rothstein N, Sleep Apnea Patient-Centered Outcomes Network. Patient partnerships transforming sleep medicine research and clinical care: perspectives from the Sleep Apnea Patient-Centered Outcomes Network. J Clin Sleep Med 2016;12(7):1053–1058.