Plain English summary Background The Canadian Institutes of Health Research funded a program, "patient-oriented research" (POR), to change the way health research is done. POR involves patients and their families/caregivers as equal partners on research teams with researchers, healthcare providers and decision-makers. The authors of this paper work through a unit in British Columbia, Canada that functions to help research teams learn how to do patient-oriented research. We felt that we could not train people if we didn't first understand what others had learned about what competencies (knowledge, skills and attitudes) were helpful for members of these research teams. Method We used a method called a scoping review to search literature on patient-involved research. Our search included papers in academic journals as well as information on websites, training manuals, conference proceedings, governmental documents and statements from health organizations. Findings Writers reported the usefulness of many competencies for researchers and patients, with fewer competencies for healthcare providers or decision-makers. The main competencies for researchers had to do with participation, communication and conflict management; for patients they had to do with research knowledge and skills, cultural competence and participation. It was helpful that all team members want to work as part of a group for the public good. Conclusions We worked with an advisory group of people representing patients and their families/caregivers, researchers, healthcare providers and decision-makers to review our findings. We concluded that our competency statements are helpful for people to determine what they need to know or learn as they join research teams. Abstract Background The Canadian Institutes of Health Research (CIHR) launched an initiative called the Strategy for Patient-Oriented Research (SPOR) encouraging patient-oriented research (POR) that engages patients as equal partners in research teams alongside researchers, healthcare providers and health system decision-makers. Other countries have launched similar initiatives (POR-related work) yet there has never been full review of the competencies needed by individuals engaging in this work. Purpose and methods Our purpose was to summarize existing knowledge on POR and POR-related competencies by conducting a scoping review of peer-reviewed and grey literature. Our objectives were to systematically explore literature, articulate competencies necessary for research team members, identify research gaps and provide recommendations for further research. Using standard health databases and search methods, a total of 2036 sources was retrieved. Data were extracted from 35 peer-reviewed papers and 38 grey literature sources. We used an iterative process to reach consensus on competency statements. Findings and conclusions The main competencies for researchers were in categories of participation, communication and teamwork and conflict/tension management; for patients the main competencies were in research knowledge and skills, cultural competence/context and participation. While fewer competencies were documented for the other stakeholder groups, the need for understanding patient involvement in research and knowledge of the needs that research partners have are noted as competencies for healthcare providers and decision-makers. Attitudes demonstrating inclination to conduct the work were noted for all. The competencies can be used to consider learning needs of research team members and for team members wishing to assess their own readiness to serve on a POR or POR-related research team. Incidentally, we noted the lack of a common vocabulary used to describe patient-involved research, a situation making research and literature review/retrieval quite challenging. Recommendations for future research and for achieving consistency in language are addressed.

中文翻译：

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面向研究人员、患者、医疗保健提供者和决策者的以患者为导向的健康研究能力 (PORCH)：范围审查的结果。

简明英语摘要 背景 加拿大卫生研究院资助了一项名为“以患者为导向的研究”(POR) 的计划，以改变健康研究的开展方式。POR 将患者及其家人/护理人员作为研究团队的平等合作伙伴，与研究人员、医疗保健提供者和决策者一起参与。本文作者通过加拿大不列颠哥伦比亚省的一个部门开展工作，该部门旨在帮助研究团队学习如何进行以患者为导向的研究。我们认为，如果我们不首先了解其他人学到了什么能力（知识、技能和态度）对这些研究团队的成员有帮助，我们就无法培训人们。方法 我们使用一种称为范围审查的方法来搜索有关患者参与研究的文献。我们的搜索包括学术期刊上的论文以及网站信息、培训手册、会议记录、政府文件和卫生组织的声明。结果作者报告了许多能力对研究人员和患者的有用性，而对医疗保健提供者或决策者的能力则较少。研究人员的主要能力与参与、沟通和冲突管理有关；对于患者来说，他们与研究知识和技能、文化能力和参与度有关。所有团队成员都希望作为一个团体的一部分为公共利益工作，这很有帮助。结论 我们与代表患者及其家人/护理人员、研究人员、医疗保健提供者和决策者的咨询小组合作，审查我们的研究结果。我们得出的结论是，我们的能力陈述有助于人们在加入研究团队时确定他们需要知道或学习的内容。摘要背景 加拿大卫生研究院 (CIHR) 发起了一项名为“以患者为中心的研究战略”(SPOR) 的倡议，鼓励以患者为中心的研究 (POR)，让患者作为研究团队的平等伙伴与研究人员、医疗保健提供者和卫生系统一起参与决策者。其他国家已经启动了类似的举措（与 POR 相关的工作），但从未对从事这项工作的个人所需的能力进行全面审查。目的和方法 我们的目的是通过对同行评审和灰色文献进行范围审查来总结有关 POR 和 POR 相关能力的现有知识。我们的目标是系统地探索文献，阐明研究团队成员所需的能力，确定研究差距并为进一步研究提供建议。使用标准的健康数据库和搜索方法，共检索到 2036 个来源。数据来自 35 篇同行评议论文和 38 篇灰色文献来源。我们使用迭代过程来就能力陈述达成共识。调查结果和结论 研究人员的主要能力是参与、沟通和团队合作以及冲突/紧张管理。患者的主要能力是研究知识和技能、文化能力/背景和参与。虽然记录的其他利益相关者群体的能力较少，了解患者参与研究的必要性以及研究合作伙伴的需求知识被认为是医疗保健提供者和决策者的能力。所有人都注意到了表明愿意开展这项工作的态度。这些能力可用于考虑研究团队成员的学习需求，以及希望评估自己为 POR 或 POR 相关研究团队服务的准备情况的团队成员。顺便说一句，我们注意到缺乏用于描述患者参与研究的通用词汇，这种情况使得研究和文献回顾/检索非常具有挑战性。提出了对未来研究和实现语言一致性的建议。所有人都注意到了表明愿意开展这项工作的态度。这些能力可用于考虑研究团队成员的学习需求，以及希望评估自己为 POR 或 POR 相关研究团队服务的准备情况的团队成员。顺便说一句，我们注意到缺乏用于描述患者参与研究的通用词汇，这种情况使得研究和文献回顾/检索非常具有挑战性。提出了对未来研究和实现语言一致性的建议。所有人都注意到了表明愿意开展这项工作的态度。这些能力可用于考虑研究团队成员的学习需求，以及希望评估自己为 POR 或 POR 相关研究团队服务的准备情况的团队成员。顺便说一句，我们注意到缺乏用于描述患者参与研究的通用词汇，这种情况使得研究和文献回顾/检索非常具有挑战性。提出了对未来研究和实现语言一致性的建议。我们注意到缺乏用于描述患者参与研究的通用词汇，这种情况使得研究和文献回顾/检索非常具有挑战性。提出了对未来研究和实现语言一致性的建议。我们注意到缺乏用于描述患者参与研究的通用词汇，这种情况使得研究和文献回顾/检索非常具有挑战性。提出了对未来研究和实现语言一致性的建议。