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一个需要被听到的声音:马来西亚的卫生技术评估和临床实践指南中的患者和公众参与。

A voice to be heard: patient and public involvement in health technology assessment and clinical practice guidelines in Malaysia.

机构信息

Medical Development Division, Ministry of Health Malaysia, Malaysian Health Technology Assessment Section, Putrajaya62590, Malaysia.

出版信息

Int J Technol Assess Health Care. 2021 Mar 22;37:e47. doi: 10.1017/S0266462321000118.

DOI:10.1017/S0266462321000118
PMID:33745482
Abstract

Patient and public involvement (PPI) in health technology assessment (HTA) is widely promoted to ensure that all health-related decisions are made after taking into consideration the viewpoints of important stakeholders. In Malaysia, patients or their representatives have been involved in the development of HTA and Clinical Practice Guidelines (CPG) since 2009 and their influences have been growing steadily over the years. This paper aimed to describe the journey, achievements, challenges, and future direction of the PPI throughout all stages of the development and implementation of HTA and CPG in Malaysia. Currently, in Malaysia, patients or their representatives are mainly involved during the initial development of HTA and CPG drafts as well as during the internal and external reviews. Additionally, they are also encouraged to be involved during the implementation of HTA and CPG recommendations. Although their involvement in this aspect has slowly increased over time, challenges remain in the form of limited representativeness of selected patients or carers, uncertainty on the level of patient involvement allowed during the HTA/CPG development processes, and limited health literacy, which affect their ability to contribute meaningfully throughout the processes. Continuous improvement in these processes is important as patients or their representatives play a pivotal role in ensuring transparency, accountability, and credibility throughout the HTA/CPG development and decision-making processes.

摘要

患者和公众参与(PPI)在卫生技术评估(HTA)中被广泛提倡,以确保所有与健康相关的决策都是在考虑到重要利益相关者的观点后做出的。在马来西亚,自 2009 年以来,患者或其代表已参与 HTA 和临床实践指南(CPG)的制定,并且他们的影响力近年来一直在稳步增长。本文旨在描述 PPI 在马来西亚 HTA 和 CPG 发展和实施的所有阶段的历程、成就、挑战和未来方向。目前,在马来西亚,患者或其代表主要在 HTA 和 CPG 草案的初步制定以及内部和外部审查期间参与。此外,还鼓励他们在 HTA 和 CPG 建议的实施过程中参与。尽管他们在这方面的参与随着时间的推移而缓慢增加,但仍存在一些挑战,例如选定患者或照顾者的代表性有限、HTA/CPG 制定过程中允许患者参与的程度不确定以及健康素养有限,这些因素影响了他们在整个过程中做出有意义贡献的能力。这些过程的持续改进很重要,因为患者或其代表在确保 HTA/CPG 制定和决策过程的透明度、问责制和可信度方面发挥着关键作用。

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