Integrating values and consumer involvement in guidelines with the patient at the center: article 8 in Integrating and coordinating efforts in COPD guideline development. An official ATS/ERS workshop report.
Integrating values and consumer involvement in guidelines with the patient at the center: article 8 in Integrating and coordinating efforts in COPD guideline development. An official ATS/ERS workshop report.
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DOI：
10.1513/pats.201208-061st
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发表时间：
2012-12-01
期刊：
影响因子：
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通讯作者：
Schunemann, Holger J
中科院分区：
文献类型：
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作者：
Kelson, Marcia;Akl, Elie A;Schunemann, Holger J
简介：专业学会，像世界上许多其他组织一样，已经认识到需要使用严格的流程来确保医疗保健建议是根据现有的最佳研究证据提供的。他们还意识到需要让医疗保健消费者（患者、护理人员和公众）参与进来，并将他们的价值观和偏好整合到临床指南的制定中。这是14篇系列文章中的第8篇，为呼吸道和其他疾病的指南制定者提供建议。它的重点是在哪里找到关于消费者的价值观和偏好的信息，在指南开发过程中的什么时候集成他们的价值观和偏好，以及为什么。方法：在这篇综述中，我们解决了以下问题：(1)“消费者”的含义是什么？(2)为什么要将医疗保健消费者（患者、护理人员和公众）的价值观和偏好纳入临床实践指南？(3)消费者价值观的信息来源是什么？(4)何时以及如何将消费者的价值观和偏好纳入慢性阻塞性肺疾病指南建议？我们将消费者定义为患者、护理人员和公众成员，不包括可能也被确定为指南消费者的群体，包括卫生专业人员、提供者和服务专员。我们检索了PubMed和其他方法学研究数据库，以获取现有的系统综述和相关的方法学研究。我们自己没有进行系统的审查。我们的结论是基于现有的证据，辅以对一些定性研究的快速评估、指南开发者正在做的事情的经验以及研讨会讨论。结果：指南制定者使用消费者价值观和偏好信息与消费者直接参与指南制定过程之间需要明确区分。消费者价值观的信息来源包括研究文献和直接从代表消费者利益的组织和个人那里获得的价值观。为了补充消费者价值的识别，在指南制定的各个阶段有一系列方法让消费者参与进来，从咨询到指南制定小组的直接成员。结论：循证指南需要明确考虑所有相关利益相关者（包括消费者）的价值观和偏好，并为患者、护理人员和公众提供机会，参与到考虑这些价值观并将其纳入指南建议制定的过程中。
INTRODUCTION: Professional societies, like many other organizations around the world, have recognized the need to use rigorous processes to ensure that healthcare recommendations are informed by the best available research evidence. They are also realizing the need to involve consumers of healthcare (patients, caregivers, and the public) and integrate their values and preferences in clinical guideline development. This is the eighth of a series of 14 articles that were prepared to advise guideline developers in respiratory and other diseases. It focuses on where to find information about consumer values and preferences, at what points in the guideline development process to integrate their values and preferences, and why.METHODS: In this review, we addressed the following questions: (1) What do we mean by "consumers"? (2) Why integrate the values and preferences of consumers of healthcare (patients, caregivers, and the public) into clinical practice guidelines? (3) What are the sources of information on consumer values? (4) When and how should consumer values and preferences be integrated into chronic obstructive pulmonary disease guideline recommendations? We defined consumers as patients, caregivers, and members of the public, excluding groups that may also be identified as consumers of guidelines including health professionals, providers, and commissioners of services. We searched PubMed and other databases of methodological studies for existing systematic reviews and relevant methodological research. We did not conduct systematic reviews ourselves. Our conclusions are based on available evidence, supplemented by a rapid appraisal of a selection of qualitative studies, experience of what guideline developers are doing, and workshop discussions.RESULTS: A clear distinction needs to be made between the use of information on consumer values and preferences by guideline developers, and the direct involvement of consumers in guideline development processes. Sources of information on consumer values include the research literature and direct elicitation of values both from organizations representing consumer interests and from individuals. To complement the identification of consumer values, there are a range of methods for involving consumers at all stages of guideline development, from consultation to direct membership of guideline development groups.CONCLUSIONS: Evidence-based guidelines need to consider explicitly the values and preferences of all relevant stakeholders (including those of consumers) and to provide opportunities for patients, caregivers, and the public to engage in the processes that consider and integrate those values into the development of guideline recommendations.