Redline Susan, Baker-Goodwin Si, Bakker Jessie P, Epstein Matthew, Hanes Sherry, Hanson Mark, Harrington Zinta, Johnston James C, Kapur Vishesh K, Keepnews David, Kontos Emily, Lowe Andy, Owens Judith, Page Kathy, Rothstein Nancy
Brigham and Women's Hospital, Harvard Medical School, Boston, MA.
Sleep Apnea Patient-Centered Outcomes Network.
J Clin Sleep Med. 2016 Jul 15;12(7):1053-8. doi: 10.5664/jcsm.5948.
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.
由于近期实践中不断发展的趋势，睡眠医学作为一门学科不得不应对降低成本、改善治疗效果以及证明自身价值等多方面汇聚而来的压力。患者“研究者”处于独特地位，能够参与到满足患者特定需求和优先事项的倡议中，并有助于确定极有可能被“客户”接受的干预措施。然而，迄今为止，在影响相关政策和实践指南的过程中，“患者声音”很大程度上一直缺失。在本特别报告中，睡眠呼吸暂停以患者为中心的结局网络（SAPCON）的患者和研究负责人进行探讨，该网络是一个由患者、研究人员和临床医生组成的全国性合作团体，致力于推动以患者为中心的比较效果研究，在睡眠呼吸暂停的背景下讨论这些相互关联的挑战，以及患者和以患者为中心的网络在为满足患者需求而开展的循证研究中可能发挥的作用。我们首先简要讨论睡眠医学在成本、治疗效果和价值方面面临的挑战。然后，我们讨论患者和以患者为中心的网络在设计研究以指导更好的睡眠医疗保健方面可以发挥的关键作用，以及国家对这类倡议的支持。最后，我们总结转向患者 - 研究人员 -临床医生新型合作模式过程中的一些挑战。通过在患者、临床医生和研究人员之间建立牢固的合作关系，像SAPCON这样的网络可以活生生地展示如何在医疗保健中实现价值。
