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医疗保健中的参与式时代精神:是时候建立一门参与科学了。

The Participatory Zeitgeist in Health Care: It is Time for a Science of Participation.

作者信息

Palmer Victoria Jane

机构信息

The Department of General Practice, Melbourne Medical School, The University of Melbourne, Melbourne, Australia.

出版信息

J Particip Med. 2020 Jan 10;12(1):e15101. doi: 10.2196/15101.

Abstract

Participation in health care is currently the zeitgeist/spirit of our times. A myriad of practices characterizes this "participatory Zeitgeist" in contemporary health care, which range from patients and professionals collaborating as partners in service delivery and treatment decision-making, to crowdsourced cures and participation in online communities, to using health apps, to involvement in health care quality improvement initiatives for systems redesign using coproduction and co-design methods. To date, patient engagement and participation in online communities and the use of apps have received a good deal of attention in participatory medicine. However, there has been a less critical examination of participation in health care planning, design, delivery, and improvement. In the face of what Thomas Kuhn called a scientific revolution, we are presented with the opportunity to re-examine some of the assumptions underpinning participation in health care and some of the emerging anomalies and weaknesses in the current science. This re-examination will allow the development of a new paradigm, a science of participation. In this science, we can systematically test, refine, and advance participation in health care to build a unifying language and theories from across the interdisciplinary fields of participatory design, medicine, and research to develop and test models to explain impacts and outcomes. A science of participation will allow the emergent and unexplained facts to be addressed in the current participatory mood of health care planning, design, delivery, and improvement.

摘要

参与医疗保健是当下我们这个时代的时代精神。当代医疗保健中,无数实践体现了这种“参与式时代精神”,涵盖从患者与专业人员作为服务提供和治疗决策的伙伴进行协作,到众包疗法和参与在线社区,再到使用健康应用程序,以及参与采用共同生产和共同设计方法进行系统重新设计的医疗保健质量改进计划。迄今为止,患者参与在线社区以及应用程序的使用在参与式医疗中受到了大量关注。然而,对于参与医疗保健规划、设计、提供和改进的审视却相对较少。面对托马斯·库恩所称的科学革命,我们有机会重新审视一些支撑医疗保健参与的假设以及当前科学中一些新出现的异常情况和弱点。这种重新审视将促成一种新范式的发展,即参与科学。在这门科学中,我们可以系统地测试、完善并推进医疗保健中的参与,从参与式设计、医学和研究等跨学科领域构建统一的语言和理论,以开发和测试模型来解释影响和结果。参与科学将能够解决当前医疗保健规划、设计、提供和改进的参与式氛围中出现的无法解释的事实。

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