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参与健康研究、治疗指南和监管流程的患者参与实用指南:世界卫生组织(WHO)和欧洲临床与经济骨质疏松、骨关节炎和肌肉骨骼疾病学会(ESCEO)组织的专家组会议的结果。

Practical guidance for engaging patients in health research, treatment guidelines and regulatory processes: results of an expert group meeting organized by the World Health Organization (WHO) and the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO).

机构信息

Department of Medical Humanities, Amsterdam University Medical Centre, Amsterdam, The Netherlands.

MRC Lifecourse Epidemiology Unit, University of Southampton, Southampton General Hospital, Southampton, UK.

出版信息

Aging Clin Exp Res. 2019 Jul;31(7):905-915. doi: 10.1007/s40520-019-01193-8. Epub 2019 Apr 16.

Abstract

There is increasing emphasis on patient-centred research to support the development, approval and reimbursement of health interventions that best meet patients' needs. However, there is currently little guidance on how meaningful patient engagement may be achieved. An expert working group, representing a wide range of stakeholders and disciplines, was convened by the European Society for Clinical and Economic Aspects of Osteoporosis, Osteoarthritis and Musculoskeletal Diseases (ESCEO) and the World Health Organization (WHO). Through a structured, collaborative process the group generated practical guidance to facilitate optimal patient engagement in clinical development and regulatory decisions. Patient engagement is a relational process. The principles outlined in this report were based on lessons learned through applied experience and on an extensive dialogue among the expert participants. This practice guidance forms a starting point from which tailoring of the approach to suit different chronic diseases may be undertaken.

摘要

越来越强调以患者为中心的研究,以支持开发、批准和报销最能满足患者需求的卫生干预措施。然而,目前关于如何实现有意义的患者参与的指导意见很少。一个由代表广泛利益相关者和学科的专家工作组,由欧洲骨质疏松症、骨关节炎和肌肉骨骼疾病临床和经济方面学会(ESCEO)和世界卫生组织(WHO)召集。通过一个结构化的、协作的过程,该小组提供了切实可行的指导,以促进患者在临床开发和监管决策中的最佳参与。患者参与是一个关系过程。本报告中概述的原则是基于应用经验中吸取的教训,并在专家参与者之间进行了广泛的对话。本实践指南提供了一个起点,可据此针对不同的慢性疾病定制方法。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d806/6589151/5d57e57be430/40520_2019_1193_Fig1_HTML.jpg

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