title: Patient Partnerships Transforming Sleep Medicine Research and Clinical Care: Perspectives from the Sleep Apnea Patient-Centered Outcomes Network.
abstract: Due to an ongoing recent evolution in practice, sleep medicine as a discipline has been compelled to respond to the converging pressures to reduce costs, improve outcomes, and demonstrate value. Patient "researchers" are uniquely placed to participate in initiatives that address the specific needs and priorities of patients and facilitate the identification of interventions with high likelihood of acceptance by the "customer." To date, however, the "patient voice" largely has been lacking in processes affecting relevant policies and practice guidelines. In this Special Report, patient and research leaders of the Sleep Apnea Patient-Centered Outcomes Network (SAPCON), a national collaborative group of patients, researchers and clinicians working together to promote patient-centered comparative effectiveness research, discuss these interrelated challenges in the context of sleep apnea, and the role patients and patient-centered networks may play in informing evidence-based research designed to meet patient's needs. We first briefly discuss the challenges facing sleep medicine associated with costs, outcomes, and value. We then discuss the key role patients and patient-centered networks can play in efforts to design research to guide better sleep health care, and national support for such initiatives. Finally, we summarize some of the challenges in moving to a new paradigm of patient-researcher-clinician partnerships. By forging strong partnerships among patients, clinicians and researchers, networks such as SAPCON can serve as a living demonstration of how to achieve value in health care.
authors.affiliation: Brigham and Women's Hospital, Harvard Medical School, Boston, MA.|Sleep Apnea Patient-Centered Outcomes Network.
authors.forename: Susan
authors.initials: S
authors.lastname: Redline
authors.affiliation: Sleep Apnea Patient-Centered Outcomes Network.
authors.forename: Si
authors.initials: S
authors.lastname: Baker-Goodwin
authors.affiliation: Sleep Apnea Patient-Centered Outcomes Network.
authors.forename: Jessie P
authors.initials: JP
authors.lastname: Bakker
authors.affiliation: Sleep Apnea Patient-Centered Outcomes Network.
authors.forename: Matthew
authors.initials: M
authors.lastname: Epstein
authors.affiliation: Sleep Apnea Patient-Centered Outcomes Network.
authors.forename: Sherry
authors.initials: S
authors.lastname: Hanes
authors.affiliation: Sleep Apnea Patient-Centered Outcomes Network.
authors.forename: Mark
authors.initials: M
authors.lastname: Hanson
authors.affiliation: Department of Respiratory and Sleep Medicine, Liverpool Hospital, Sydney, Australia.
authors.forename: Zinta
authors.initials: Z
authors.lastname: Harrington
authors.affiliation: Sleep Apnea Patient-Centered Outcomes Network.
authors.forename: James C
authors.initials: JC
authors.lastname: Johnston
authors.affiliation: Sleep Apnea Patient-Centered Outcomes Network.|University of Washington Medicine Sleep Center, Seattle, WA.
authors.forename: Vishesh K
authors.initials: VK
authors.lastname: Kapur
authors.affiliation: Sleep Apnea Patient-Centered Outcomes Network.|Hunter-Bellevue School of Nursing, Hunter College/CUNY, New York, NY.
authors.forename: David
authors.initials: D
authors.lastname: Keepnews
authors.affiliation: Brigham and Women's Hospital, Harvard Medical School, Boston, MA.|Sleep Apnea Patient-Centered Outcomes Network.
authors.forename: Emily
authors.initials: E
authors.lastname: Kontos
authors.affiliation: Sleep Apnea Patient-Centered Outcomes Network.
authors.forename: Andy
authors.initials: A
authors.lastname: Lowe
authors.affiliation: Sleep Apnea Patient-Centered Outcomes Network.|Boston Children's Hospital, Harvard Medical School, Boston, MA.
authors.forename: Judith
authors.initials: J
authors.lastname: Owens
authors.affiliation: Sleep Apnea Patient-Centered Outcomes Network.
authors.forename: Kathy
authors.initials: K
authors.lastname: Page
authors.affiliation: Sleep Apnea Patient-Centered Outcomes Network.
authors.forename: Nancy
authors.initials: N
authors.lastname: Rothstein
mesh_terms: D035843:Biomedical Research; D003299:Cooperative Behavior; D006801:Humans; D007400:Interprofessional Relations; D063868:Patient Outcome Assessment; D018802:Patient-Centered Care / Q000379:methods*; D012891:Sleep Apnea Syndromes / Q000175:diagnosis / Q000628:therapy*; D056508:Sleep Medicine Specialty / Q000379:methods*
keywords: compartive effectiveness research; outcomes; patient networks; sleep apnea