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患者参与:与患者合作开展研究的全部内容。

Patient engagement: What partnering with patient in research is all about.

机构信息

The Ottawa Hospital, General Campus, Centre for Practice Changing Research, 501 Smyth Road, Ottawa, ON K1H 8L6, Canada.

出版信息

Thromb Res. 2017 Feb;150:113-120. doi: 10.1016/j.thromres.2016.10.029. Epub 2016 Oct 28.

Abstract

The inclusion of patients on important decision related to healthcare has marked a significant 'patient revolution' during the last several decades. Patients now played active roles in personal health decisions, healthcare delivery and policy making, and the development of clinical practice guidelines. Such inclusion of patients' values has resulted in largely positive effects. The next wave of this 'patient revolution' is active and meaningful engagement with patients in health related research. Similar to other aspects of healthcare, it is increasingly recognized that experienced patients, their families, and caregivers, have a wealth of knowledge that comes from living and experiencing a medical condition. By understanding and valuing this experience-based knowledge, research priority setting, research study design, trial conduct, analysis of results and knowledge dissemination can be positively influenced. Patients can challenge our assumptions, align research with the needs of patients, increase transparency and trust in research, and lead to research that has a greater impact on the ultimate care of patients. This new approach to research is timed well with a larger movement towards simple, pragmatic clinical trials better reflecting realistic patient care. While there is still much to be learned about the best methods and exact impacts of patient engagement in research, preliminary results are promising and future venous thromboembolism research will likely benefit from the adoption of patient engagement in research.

摘要

在过去几十年中,与医疗保健相关的重要决策中纳入患者标志着一场重大的“患者革命”。现在,患者在个人健康决策、医疗保健提供和政策制定以及临床实践指南的制定中发挥着积极的作用。这种纳入患者价值观的做法产生了很大的积极影响。这场“患者革命”的下一波浪潮是积极而有意义地让患者参与与健康相关的研究。与医疗保健的其他方面类似,人们越来越认识到,有经验的患者、他们的家人和照顾者拥有丰富的知识,这些知识来自于生活和经历医疗状况。通过理解和重视这种基于经验的知识,可以积极影响研究重点的设定、研究设计、试验实施、结果分析和知识传播。患者可以挑战我们的假设,使研究与患者的需求保持一致,提高研究的透明度和信任度,并开展对患者最终护理产生更大影响的研究。这种新的研究方法恰逢一个更大的趋势,即采用简单、务实的临床试验,更好地反映现实的患者护理。虽然关于患者参与研究的最佳方法和确切影响还有很多需要学习,但初步结果很有希望,未来的静脉血栓栓塞症研究可能会受益于患者参与研究。

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