1 Duke Cancer Institute and the Fuqua School of Business, Duke University , Durham, North Carolina.
2 Dartmouth Hitchcock Health and The Dartmouth Institute for Health Policy and Clinical Practice , Lebanon , New Hampshire.
J Palliat Med. 2018 Mar;21(S2):S61-S67. doi: 10.1089/jpm.2017.0354. Epub 2017 Nov 1.
Palliative care offers an approach to the care of people with serious illness that focuses on quality of life and aligning care with individual and family goals, and values in the context of what is medically achievable.
Measurement of the impact of palliative care is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness.
A learning health system that includes patients and families partnering with clinicians and care teams, is directly linked to a registry to support networks for improvement and research, and offers an ideal framework for measuring what matters to a range of stakeholders interested in improving care for this population.
Measurement focuses on the individual patient and family experience as the fundamental outcome of interest around which all care delivery is organized.
We describe an approach to codesigning and implementing a palliative care registry that functions as a learning health system, by combining patient and family inputs and clinical data to support person-centered care, quality improvement, accountability, transparency, and scientific research.
The potential for a palliative care learning health system that, by design, brings together enriched information environments to support coproduction of healthcare and facilitated peer networks to support patients and families, collaborative clinician networks to support palliative care program improvement, and collaboratories to support research and the application of research to benefit individual patients is immense.
姑息治疗为患有严重疾病的患者提供了一种关注生活质量的护理方法，使护理与个人和家庭目标以及在医学可实现范围内的价值观保持一致。
姑息治疗效果的衡量对于确定哪些患者在哪些环境中适合哪种治疗方法至关重要，这样可以学习、改善护理，并确保为患有严重疾病的人提供高价值的护理。
一个包含患者和家属与临床医生和护理团队合作的学习型医疗系统，与一个支持改进和研究网络的登记处直接相关，并为衡量一系列对改善该人群护理感兴趣的利益相关者的重要事项提供了理想的框架。
测量重点是个体患者和家庭的体验，作为所有护理服务组织的基本关注结果。
我们描述了一种联合设计和实施姑息治疗登记处的方法，该方法作为一个学习型医疗系统，通过结合患者和家属的投入以及临床数据，支持以患者为中心的护理、质量改进、问责制、透明度和科学研究。
一个姑息治疗学习型医疗系统的潜力是巨大的，通过设计，该系统将丰富的信息环境结合起来，以支持医疗保健的共同创造，并为患者和家属提供便利的同行网络，支持姑息治疗项目的改进，以及合作实验室，以支持研究和将研究应用于造福个体患者。
