消费者参与生活证据 "是一个美好的机会":与患者和方法论专家共同开展的国际定性研究

Anneliese Synnot, Laura Weeks, Sophie J. Hill, Lyubov Lytvyn, Tamara Radar, Rebecca Randall, Richard Morley, Allison Jaure, Julian H. Elliott, Tari Turner
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引用次数: 0

摘要

目标 我们旨在探索消费者参与(即患者和公众参与)活证据(根据最新证据不断更新的系统综述、指南和健康技术评估)的机遇、挑战和实用策略。 研究设计与设置 在这项国际性定性研究中,对活体证据感兴趣的方法论专家(系统综述、指南和健康技术评估的制作者)和有证据合成制作经验的消费者(患者、非正式护理者、公众及其代表)参加了面对面研讨会、在线焦点小组或半结构化访谈。我们采用描述性综合方法对数据进行了分析。 结果 来自 9 个国家的 41 名方法学家和 7 名消费者参加了此次活动。两组参与者中都有少数人有直接的生活证据综合经验。我们确定了七个主题:在招募过程中利用消费者的热情;在加深关系的基础上让消费者 "更好地 "参与进来;改善并持续提供指导、支持和报酬;保持持续的承诺;可能不同的指南制定阶段和任务;更大的消费者群体和多重角色;以及持续吸收消费者的见解。 结论 方法论专家和消费者认为,活证据方法是探索消费者参与新模式的当务之急和契机,它将更大范围、更多样化的消费者群体聚集在一起,与方法论专家建立真正的伙伴关系。活证据的消费者参与策略可以不断改进参与方法,并随着消费者经验、偏好和价值观的发展和变化而不断融入其中。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Consumer engagement in living evidence “a beautiful opportunity”: International qualitative study with patients and methodologists

Objective

We aimed to explore the opportunities, challenges and practical strategies for consumer engagement (i.e., patient and public involvement) in living evidence (systematic reviews, guidelines and health technology assessments that are continually updated with the latest evidence).

Study Design and Setting

In this international qualitative study, methodologists (producers of systematic reviewers, guidelines and health technology assessments) with an interest in living evidence, and consumers (patients, informal carers, the public and their representatives) with experience contributing to evidence synthesis production participated in either a face-to-face workshop, online focus group or semistructured interview. We analysed data using descriptive synthesis.

Results

Forty-one methodologists and seven consumers from nine countries participated. A minority of participants in both groups had direct experience with living evidence synthesis. We identified seven themes: harnessing consumer enthusiasm in recruitment; ‘better’ consumer engagement based on deeper relationships; improved and ongoing orientation, support and remuneration; maintaining an ongoing commitment; potentially different guideline development stages and tasks; larger groups of consumers and multiple roles; and ongoing incorporation of consumer insights.

Conclusion

Methodologists and consumers believe living evidence approaches present an imperative and an opportunity to explore new models of consumer engagement, bringing together larger and more diverse communities of consumers in true partnerships with methodologists. Consumer engagement strategies for living evidence allow ongoing improvement to engagement methods and ongoing incorporation of consumer experiences, preferences and values as they develop and change over time.

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