School of Public Health and Preventive Medicine, Monash University, Level 4, 553 St Kilda Road Melbourne Victoria 3004 Australia; Centre for Health Communication and Participation, School of Public Health and Psychological Sciences, La Trobe University, Plenty Rd, Bundoora, 3086, Victoria, Australia.
Stroke Foundation, Level 7, 461 Bourke St, Melbourne, 3000, Victoria, Australia.
J Clin Epidemiol. 2023 Mar;155:97-107. doi: 10.1016/j.jclinepi.2022.12.020. Epub 2022 Dec 30.
To describe and reflect on the consumer engagement approaches used in five living guidelines from the perspectives of consumers (i.e., patients, carers, the public, and their representatives) and guideline developers.
In a descriptive report, we used a template to capture engagement approaches and the experiences of consumers and guideline developers in living guidelines in Australia and the United Kingdom. Responses were summarized using descriptive synthesis.
One guideline used a Consumer Panel, three included two to three consumers in the guideline development group, and one did both. Much of our experience was common to all guidelines (e.g., consumers felt welcomed but that their role initially lacked clarity). We identified six challenges and opportunities specific to living guidelines: managing the flow of work; managing engagement in online environments; managing membership of the panel; facilitating more flexibility, variety and depth in engagement; recruiting for specific skills-although these can be built over time; developing living processes to improve; and adapting consumer engagement together.
Consumer engagement in living guidelines should follow established principles of consumer engagement in guidelines. Conceiving the engagement as living, underpinned by a living process evaluation, allows the approach to be developed with consumers over time.
从消费者（即患者、照顾者、公众及其代表）和指南制定者的角度描述和反思 5 项现行指南中采用的消费者参与方法。
在一份描述性报告中，我们使用模板来记录参与方法，以及澳大利亚和英国现行指南中消费者和指南制定者的经验。使用描述性综合来总结答复。
有 1 项指南使用了消费者小组，3 项指南在指南制定小组中纳入了 2 至 3 名消费者，1 项指南同时采用了这两种方法。我们的大部分经验在所有指南中都是共通的（例如，消费者感到受欢迎，但他们的角色最初不够明确）。我们确定了 6 项针对现行指南的挑战和机遇：管理工作流程；管理在线环境中的参与度；管理小组的成员构成；促进参与的灵活性、多样性和深度；招募特定技能的人员——尽管这些技能可以随着时间的推移而建立；制定现行流程以改进；以及共同调整消费者参与。
现行指南中的消费者参与应遵循指南中消费者参与的既定原则。将参与视为现行，以现行过程评估为基础，可以随着时间的推移与消费者一起开发这种方法。
