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探讨与患者参与医疗保健相关的伦理问题:患者、临床医生和研究人员的观点。

Exploring Ethical Issues Related to Patient Engagement in Healthcare: Patient, Clinician and Researcher's Perspectives.

机构信息

Pragmatic Health Ethics Research Unit, Institut de recherches cliniques de Montréal (IRCM), 110 avenue des Pins Ouest, Montréal, Québec, H2W 1R7, Canada.

Department of Management, HEC Montréal, 3000 Chemin de la Côte-Sainte-Catherine, Montréal, Québec, H3T 2A7, Canada.

出版信息

J Bioeth Inq. 2019 Jun;16(2):237-248. doi: 10.1007/s11673-019-09904-6. Epub 2019 Feb 11.

Abstract

Patient engagement in healthcare is increasingly discussed in the literature, and initiatives engaging patients in quality improvement activities, organizational design, governance, and research are becoming more and more common and have even become mandatory for certain health institutions. Here we discuss a number of ethical challenges raised by this engagement from patients from the perspectives of research, organizational/quality improvement practices, and patient experiences, while offering preliminary recommendations as to how to address them. We identified three broad categories of ethical issues that intersect between the different types of patient engagement: (1) establishing a shared vision about goals of patient engagement and respective roles; (2) the process and method of engaging with patients; and (3) practical aspects of patient engagement. To explain these issues, we build from our personal, professional, and academic experiences, as well as traditions such as pragmatism and hermeneutics that stress the importance of participation, empowerment, and engagement.  Patient engagement can be highly valuable at numerous levels, but particular attention should be paid to the process of engaging with patients and related ethical issues. Some lessons from the literature on the ethics of participatory research can be translated to organizational and quality improvement practices.

摘要

患者在医疗保健中的参与度在文献中越来越多地被讨论,让患者参与质量改进活动、组织设计、治理和研究的举措也越来越普遍,甚至对某些医疗机构来说已经成为强制性要求。在这里,我们从研究、组织/质量改进实践和患者体验的角度讨论了由患者参与带来的一些伦理挑战,并就如何解决这些问题提出了初步建议。我们确定了在不同类型的患者参与中交叉存在的三大类伦理问题:(1)就患者参与的目标和各自的角色建立共同愿景;(2)与患者接触的过程和方法;(3)患者参与的实际方面。为了解释这些问题,我们借鉴了我们的个人、专业和学术经验,以及实用主义和解释学等传统,这些传统强调参与、赋权和参与的重要性。患者参与在多个层面上都可能非常有价值,但应特别注意与患者接触的过程和相关的伦理问题。可以将参与式研究伦理方面文献中的一些经验教训应用于组织和质量改进实践。

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