患者和公众参与准则很重要，因为它将患者视为专家，使消费者能够做出明智的医疗保健决策，并尊重公民和消费者在医疗保健政策中的权利。

Healthcare guidelines are not rules for clinicians and patients to follow, but rather guidance on what steps are most likely to lead to the best outcomes for most patients. This guidance is part of the foundation for shared decision making. Also called “clinical practice guidelines” or “evidence-based guidelines,” healthcare guidelines are documents that include two parts: (1) a thorough review of the available research for a specific question with an assessment of how well the research was done and (2) recommendations for the best medical care based on the reviewed evidence.

尽管国际指南制定标准在某些细微差别方面有所不同，但同意优质临床实践指南的许多核心要素。例如，指南国际网络标准，美国医学研究所（IOM）标准, and the评估指南研究与评估（同意）企业工具所有人都强调了透明发展过程的重要性，包括相关利益相关者的使用，使用系统的证据审查以及基于证据和元素（例如预期的利益和危害）的建议开发。

国际移民组织(Institute of Medicine) published its八个标准为了在2011年制定值得信赖的临床实践指南。除了强调上述概述的实践外，IOM还包括两个标准，专门确定了在整个指南开发过程中涉及患者和/或消费者利益相关者的重要性。

It is believed that patient and public involvement in guidelines will make guidelines more patient-centered and trustworthy.

Standard 3 states that guideline development groups should include patient and public involvement when developing guideline questions and reviewing the draft guideline, at a minimum. Standard 7 states that patients and the public should have the chance to review guidelines through external review and public comment processes prior to guideline finalization. Patient and consumer engagement is also emphasized by the Guidelines-International-Network, which published atoolkit关于患者参与指南的方法。

患者和公众参与准则很重要，因为它将患者视为专家，使消费者能够做出明智的医疗保健决策，并尊重公民和消费者在医疗保健政策中的权利。It is also believed that patient and public involvement in guidelines will make guidelines more patient-centered and trustworthy.

这re are examples of guideline developers partnering with patients and consumers when writing guidelines. For example, the National Institute for Health and Care Excellence (NICE) in the United Kingdom involves patients and the public in guideline development invarious ways包括参与指南发展小组和公开听证会。

但是，唯一调查指南开发人员参与患者或消费者的频率的研究是2008年的国际调查。that study, only 29% of 31 responding guideline developers always involved consumers; 39% reported involving consumers “only if necessary.”

Are guideline developers actually involving patients?

鉴于越来越重视患者和公众参与研究，准则和卫生政策，并且鉴于自IOM出版以自信任的临床实践指南开发的IOM标准以来已经过去了五年根据建议，正在吸引患者和公众进行指南开发。这results of this studyare published in the October issue ofResearch Involvement and Engagement.

We investigated the guideline development approaches of 101 U.S.-based guideline developers who had more than one guideline included in theNational Guideline Clearinghousesince 2011 or who were members of the Guidelines-International-Network North America chapter when the research started in 2015.

只有8％的指南开发人员需要患者和公众参与指南开发小组。

结果令人震惊。只有8％的指南开发人员需要患者和公众参与准则开发小组；有时另外15％需要它或将其描述为可选。只有13％的开发人员至少在某些时候涉及患者或公众进行外部审查，只有24％通常会使用公众评论。此外，只有20％的开发人员为患者或公众准备指南摘要。

这些结果表明标准和实践之间存在很大的差距。提高国家和国际标准，会议以及公众讨论突出了患者和公众参与指南（以及政策制定和研究的其他方面）的重要性和价值，但实践的频率很低。这对已发表准则的可信赖性具有影响，也反映了错过的机会。

Research suggests that patient and public contributions to guideline development include assessing guideline priorities, introducing new topics, identifying key populations and outcomes, informing whether findings are meaningful, prompting holistic approaches to care, assessing how recommendations interact with patient values, and writing plain-language guideline versions.

Saying that patient and public involvement in guidelines is important is clearly not enough to change practice. It is likely that guideline developers require continued assistance in how to engage patients and the public well, but developers will need to prioritize patient and public involvement and commit the necessary resources. If practice does not change, guideline repositories like the National Guideline Clearinghouse may need to require evidence of patient and public involvement for inclusion alongside other standards for trustworthy guideline development.