Faculty of Health and Social Development, School of Nursing, University of British Columbia, Kelowna, British Columbia, Canada.
Faculty of Human and Health Sciences, School of Nursing, University of Northern British Columbia, Prince George, British Columbia, Canada.
Health Expect. 2024 Feb;27(1):e13865. doi: 10.1111/hex.13865. Epub 2023 Sep 25.
The importance of including people affected by research (e.g., community members, citizens or patient partners) is increasingly recognized across the breadth of institutions involved in connecting research with action. Yet, the increasing rhetoric of inclusion remains situated in research systems that tend to reward traditional dissemination and uphold power dynamics in ways that centre particular (privileged) voices over others. In research explicitly interested in doing research with those most affected by the issue or outcomes, research teams need to know how to advance meaningful inclusion. This study focused on listening to voices often excluded from research processes to understand what meaningful inclusion looks and feels like, and asked what contributes to being or feeling tokenized.
In this deliberative dialogue study, 16 participants with experience of navigating social exclusions and contributing to research activities reflected on what makes for meaningful experiences of inclusion. Using a co-production approach, with a diversely representative research team of 15 that included patient and community partners, we used critically reflective dialogue to guide an inclusive process to study design and implementation, from conceptualization of research questions through to writing.
We heard that: research practices, partnerships and systems all contribute to experiences of inclusion or exclusion; the insufficiency or absence of standards for accountability amplifies the experience of exclusion; and inclusive practices require intention, planning, reflection and resources.
We offer evidence-informed recommendations for the deeply relational work and practices for inclusivity, focused on promising practices for cultivating welcoming systems, spaces and relationships.
This work reflects a co-production approach, where people who use and are affected by research results actively partnered in the research process, including study design, data-generating activities, analysis and interpretation, and writing. Several of these partners are authors of this manuscript.
在将受研究影响的人（例如社区成员、公民或患者伙伴）纳入研究的重要性在涉及将研究与行动联系起来的各个机构中得到了越来越多的认可。然而，日益增多的包容性言论仍然存在于研究系统中，这些系统往往奖励传统的传播方式，并以有利于特定（特权）声音而不是其他声音的方式维持权力动态。在明确有兴趣与受问题或结果影响最大的人一起开展研究的研究团队中，需要知道如何推进有意义的包容。本研究专注于倾听经常被排除在研究过程之外的声音，以了解有意义的包容是什么样子的，并询问是什么促成了被视为或感觉是象征性的。
在这项审议性对话研究中，16 名参与者有过在社会排斥中导航并为研究活动做出贡献的经验，他们反思了促成有意义的包容体验的因素。我们采用共同生产方法，由一个包括患者和社区伙伴在内的 15 人组成的多样化代表性研究团队，使用批判性反思对话来指导包容性的研究设计和实施过程，从研究问题的概念化到写作。
我们听到：研究实践、伙伴关系和系统都有助于包容或排斥的体验；问责制标准的不足或缺失放大了排斥体验；包容性实践需要意图、计划、反思和资源。
我们提供了有证据支持的建议，用于开展深入的关系工作和包容性实践，重点是培养受欢迎的系统、空间和关系的有前途的实践。
这项工作反映了一种共同生产方法，即使用和受研究结果影响的人在研究过程中积极合作，包括研究设计、产生数据的活动、分析和解释以及写作。这些参与者中的几个人是本文的作者。
