Developing a Canadian evaluation framework for patient and public engagement in research: study protocol.
Developing a Canadian evaluation framework for patient and public engagement in research: study protocol.
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DOI：
10.1186/s40900-021-00255-4
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发表时间：
2021-02-25
影响因子：
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通讯作者：
Boivin A
中科院分区：
文献类型：
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作者：
L'Espérance A;O'Brien N;Grégoire A;Abelson J;Canfield C;Del Grande C;Dogba MJ;Fancott C;Levasseur MA;Loignon C;Majnemer A;Pomey MP;Rasiah J;Salsberg J;Santana M;Tremblay MC;Urquhart R;Boivin A
国际上患者和公众对研究的参与（PPE）不断增长，对其评估的兴趣也随之增长。在加拿大，以患者为导向的研究战略为研究和卫生系统转型中更大的个人防护装备带来了全国动力和机会。与大多数国家的情况一样，加拿大研究界缺乏通用的个人防护装备评估框架，从而限制了我们确保原则和实践之间的完整性、跨项目学习、确定共同改进领域以及评估参与影响的能力。就研究中个人防护装备的通用评估标准和指标达成共识；定义实施框架并使其适应特定人群的建议。该项目旨在通过以下方式建立一个国家适应性框架，用于评估研究中的个人防护装备： 使用协作行动研究方法，由以患者为中心的研究领导者（患者和社区合作伙伴、参与从业者、研究人员和卫生系统领导者）组成的全国联盟将共同设计评估框架。我们将通过使用名义小组技术与 18 个国家研究组织确定的 50 名患者合作伙伴和参与从业者进行一系列虚拟共识会议，开发逻辑模型的核心评估领域。然后，我们将进行两轮德尔菲法，以优先考虑流程和影响指标，并特意招募 200 名参与者，其中包括来自很少听到群体的受访者。六个专家工作组将制定建议，以实施和调整该框架以研究特定人群，包括原住民社区、移民、智力和身体残疾人、护理人员和识字率低的人。框架开发的每一步都将以公平、多样性和包容性方法为指导，以确保参与者的参与、制作的内容和提出的适应策略与多样化的个人防护装备相关。该项目的潜在贡献有三方面：1）通过向加拿大研究界提供合作评估的共同蓝图，支持国家参与学习环境； 2) 向国际研究界通报潜在（虚拟）方法，以就共同参与评估框架建立全国共识； 3) 说明了让患者和研究人员参与一项旨在加强个人防护装备评估能力的国家战略举措的共同尝试。
Patient and public engagement (PPE) in research is growing internationally, and with it, the interest for its evaluation. In Canada, the Strategy for Patient-Oriented Research has generated national momentum and opportunities for greater PPE in research and health-system transformation. As is the case with most countries, the Canadian research community lacks a common evaluation framework for PPE, thus limiting our capacity to ensure integrity between principles and practices, learn across projects, identify common areas for improvement, and assess the impacts of engagement. Building consensus on common evaluation criteria and indicators for PPE in research; Defining recommendations to implement and adapt the framework to specific populations. This project aims to build a national adaptable framework for the evaluation of PPE in research, by: Using a collaborative action-research approach, a national coalition of patient-oriented research leaders, (patient and community partners, engagement practitioners, researchers and health system leaders) will co-design the evaluation framework. We will develop core evaluation domains of the logic model by conducting a series of virtual consensus meetings using a nominal group technique with 50 patient partners and engagement practitioners, identified through 18 national research organizations. We will then conduct two Delphi rounds to prioritize process and impact indicators with 200 participants purposely recruited to include respondents from seldom-heard groups. Six expert working groups will define recommendations to implement and adapt the framework to research with specific populations, including Indigenous communities, immigrants, people with intellectual and physical disabilities, caregivers, and people with low literacy. Each step of framework development will be guided by an equity, diversity and inclusion approach in an effort to ensure that the participants engaged, the content produced, and the adaptation strategies proposed are relevant to diverse PPE. The potential contributions of this project are threefold: 1) support a national learning environment for engagement by offering a common blueprint for collaborative evaluation to the Canadian research community; 2) inform the international research community on potential (virtual) methodologies to build national consensus on common engagement evaluation frameworks; and 3) illustrate a shared attempt to engage patients and researchers in a strategic national initiative to strengthen evaluation capacity for PPE.