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Abstract：
BACKGROUND: Recent studies mention a need to investigate partnership roles and dynamics within patient and public involvement and engagement (PPIE) in health research, and how impact and outcomes are achieved. Many labels exist to describe involvement processes, but it is unknown whether the label has implications on partnerships and outcomes. This rapid review investigates how roles between patients, relatives and researchers in a broad variety of PPIE activities in health research are described in peer reviewed papers and explores what enables these partnerships.
METHODS: Rapid review of articles published between 2012 and February 2022 describing, evaluating, or reflecting on experiences of PPIE in health research. All research disciplines and research areas were eligible. Four databases (Medline, Embase, PsychInfo and CINAHL) were searched between November 2021 and February 2022. We followed PRISMA guidelines and extracted descriptive factors: year, origin, research area and discipline, study focus, framework used and co-authorship. On a selection of articles, we performed a narrative analysis of partnership roles using Smits et al.\'s. Involvement Matrix. Lastly, we performed a meta synthesis of reported enablers and outcomes of the partnerships. Patients and Relatives (PRs) have been involved in the whole rapid review process and are co-authors of this article.
RESULTS: Seventy articles from various research disciplines and areas were included. Forty articles were selected for a narrative analysis of the role description of PRs and researchers, and a meta synthesis of enablers and outcomes. Most articles described researchers as decision-makers throughout the research cycle. PRs most often were partners when they were included as co-authors; they were mostly partners in the design, analysis, write-up, and dissemination stages. Enablers of partnerships included: PR training, personality of PRs and communication skills, trust, remuneration and time.
CONCLUSIONS: Researchers\' decision-making roles gives them control of where and when to include PRs in their projects. Co-authorship is a way of acknowledging patients\' contributions which may lead to legitimation of their knowledge and the partnership. Authors describe common enablers, which can help future partnership formation.
This article investigates how other articles describe the roles patients, relatives and researchers have in patient and public involvement activities in health research. It also investigates which factors are supportive of creating these research partnerships. We searched four health research databases and found 70 relevant articles which somehow evaluated patient involvement activities in research. From these 70 articles we chose 40 which we closely investigated for descriptions of roles in the partnerships between researchers and patients and relatives. For this, we used a tool called the Involvement Matrix which uses five different roles: Listener (who is given information), Co-thinker (who is asked to give opinion), Advisor (who gives (un)solicited advice), Partner (who works as an equal partner) and Decision-maker (Who takes initiative and (final) decisions). We found that it is often researchers who take on the role of Decision-maker and that involvement often happens on their terms. We noticed that patients and relatives most often had the role of partner, when they were listed as co-authors of the article. This shows co-authorship as an authorization of their work during patient and public involvement activities. We found that patient and relative training, patients’ and relatives’ personality and communication skills, trust, financial reimbursement, and time were mentioned most often as enablers of good research partnerships.
METHODS: Rapid review of articles published between 2012 and February 2022 describing, evaluating, or reflecting on experiences of PPIE in health research. All research disciplines and research areas were eligible. Four databases (Medline, Embase, PsychInfo and CINAHL) were searched between November 2021 and February 2022. We followed PRISMA guidelines and extracted descriptive factors: year, origin, research area and discipline, study focus, framework used and co-authorship. On a selection of articles, we performed a narrative analysis of partnership roles using Smits et al.\'s. Involvement Matrix. Lastly, we performed a meta synthesis of reported enablers and outcomes of the partnerships. Patients and Relatives (PRs) have been involved in the whole rapid review process and are co-authors of this article.
RESULTS: Seventy articles from various research disciplines and areas were included. Forty articles were selected for a narrative analysis of the role description of PRs and researchers, and a meta synthesis of enablers and outcomes. Most articles described researchers as decision-makers throughout the research cycle. PRs most often were partners when they were included as co-authors; they were mostly partners in the design, analysis, write-up, and dissemination stages. Enablers of partnerships included: PR training, personality of PRs and communication skills, trust, remuneration and time.
CONCLUSIONS: Researchers\' decision-making roles gives them control of where and when to include PRs in their projects. Co-authorship is a way of acknowledging patients\' contributions which may lead to legitimation of their knowledge and the partnership. Authors describe common enablers, which can help future partnership formation.
This article investigates how other articles describe the roles patients, relatives and researchers have in patient and public involvement activities in health research. It also investigates which factors are supportive of creating these research partnerships. We searched four health research databases and found 70 relevant articles which somehow evaluated patient involvement activities in research. From these 70 articles we chose 40 which we closely investigated for descriptions of roles in the partnerships between researchers and patients and relatives. For this, we used a tool called the Involvement Matrix which uses five different roles: Listener (who is given information), Co-thinker (who is asked to give opinion), Advisor (who gives (un)solicited advice), Partner (who works as an equal partner) and Decision-maker (Who takes initiative and (final) decisions). We found that it is often researchers who take on the role of Decision-maker and that involvement often happens on their terms. We noticed that patients and relatives most often had the role of partner, when they were listed as co-authors of the article. This shows co-authorship as an authorization of their work during patient and public involvement activities. We found that patient and relative training, patients’ and relatives’ personality and communication skills, trust, financial reimbursement, and time were mentioned most often as enablers of good research partnerships.
摘要：
背景：最近的研究提到需要调查健康研究中患者和公众参与和参与（PPIE）中的伙伴关系角色和动态，以及如何实现影响和成果。存在许多标签来描述参与过程，但尚不清楚该标签是否对伙伴关系和结果有影响。这篇快速综述调查了患者之间的角色，在健康研究中广泛的PPIE活动的亲属和研究人员在同行评审的论文中进行了描述，并探讨了使这些伙伴关系成为可能的原因。
方法：快速回顾2012年至2022年2月发表的文章，评估，或反思PPIE在健康研究中的经验。所有研究学科和研究领域均符合条件。四个数据库(Medline，Embase,PsychInfo和CINAHL）在2021年11月至2022年2月之间进行了搜索。我们遵循PRISMA指南，并提取了描述性因素：年份，origin,研究领域和学科，研究重点,框架使用和共同作者。在精选的文章中，我们使用Smits等人对伙伴关系角色进行了叙述性分析。\'s.参与矩阵。最后,我们对报告的合作伙伴关系的促成因素和结果进行了荟萃综合.患者和亲属（PR）参与了整个快速审查过程，并且是本文的合著者。
结果：包括来自不同研究学科和领域的70篇文章。选取40篇文章对公关人员和研究人员的角色描述进行了叙事分析，以及推动者和结果的元综合。大多数文章将研究人员描述为整个研究周期的决策者。PR作为合著者时，通常是合作伙伴；他们大多是设计的合作伙伴，分析,write-up,传播阶段。合作伙伴关系的推动者包括：公关培训，PR的个性和沟通技巧，信任,报酬和时间。
结论：研究人员的决策角色使他们能够控制在何处以及何时将PR纳入其项目。共同作者是一种承认患者贡献的方式，这可能导致他们的知识和伙伴关系合法化。作者描述了常见的推动者，这可以帮助未来的伙伴关系的形成。
本文调查了其他文章如何描述患者的角色，亲属和研究人员在病人和公众参与健康研究活动。它还调查哪些因素支持建立这些研究伙伴关系。我们搜索了四个健康研究数据库，发现了70篇相关文章，这些文章以某种方式评估了患者参与研究的活动。从这70篇文章中，我们选择了40篇，我们仔细研究了这些文章，以描述研究人员与患者和亲属之间的伙伴关系中的角色。为此，我们使用了一种称为参与矩阵的工具，该工具使用五个不同的角色：听众（提供信息的人），共同思想家（被要求发表意见），顾问(提供(联合国)征求意见的人)，合伙人（谁作为一个平等的合作伙伴工作）和决策者（谁采取主动和（最终）决定）。我们发现，通常是研究人员扮演决策者的角色，而参与往往是按照他们的条件进行的。我们注意到患者和亲属通常扮演伴侣的角色，当他们被列为文章的共同作者时。这表明共同作者是他们在患者和公众参与活动期间的工作授权。我们发现耐心和相对训练，患者和亲属的性格和沟通技巧，信任,财务报销，和时间经常被提到是良好研究伙伴关系的推动者。
方法：快速回顾2012年至2022年2月发表的文章，评估，或反思PPIE在健康研究中的经验。所有研究学科和研究领域均符合条件。四个数据库(Medline，Embase,PsychInfo和CINAHL）在2021年11月至2022年2月之间进行了搜索。我们遵循PRISMA指南，并提取了描述性因素：年份，origin,研究领域和学科，研究重点,框架使用和共同作者。在精选的文章中，我们使用Smits等人对伙伴关系角色进行了叙述性分析。\'s.参与矩阵。最后,我们对报告的合作伙伴关系的促成因素和结果进行了荟萃综合.患者和亲属（PR）参与了整个快速审查过程，并且是本文的合著者。
结果：包括来自不同研究学科和领域的70篇文章。选取40篇文章对公关人员和研究人员的角色描述进行了叙事分析，以及推动者和结果的元综合。大多数文章将研究人员描述为整个研究周期的决策者。PR作为合著者时，通常是合作伙伴；他们大多是设计的合作伙伴，分析,write-up,传播阶段。合作伙伴关系的推动者包括：公关培训，PR的个性和沟通技巧，信任,报酬和时间。
结论：研究人员的决策角色使他们能够控制在何处以及何时将PR纳入其项目。共同作者是一种承认患者贡献的方式，这可能导致他们的知识和伙伴关系合法化。作者描述了常见的推动者，这可以帮助未来的伙伴关系的形成。
本文调查了其他文章如何描述患者的角色，亲属和研究人员在病人和公众参与健康研究活动。它还调查哪些因素支持建立这些研究伙伴关系。我们搜索了四个健康研究数据库，发现了70篇相关文章，这些文章以某种方式评估了患者参与研究的活动。从这70篇文章中，我们选择了40篇，我们仔细研究了这些文章，以描述研究人员与患者和亲属之间的伙伴关系中的角色。为此，我们使用了一种称为参与矩阵的工具，该工具使用五个不同的角色：听众（提供信息的人），共同思想家（被要求发表意见），顾问(提供(联合国)征求意见的人)，合伙人（谁作为一个平等的合作伙伴工作）和决策者（谁采取主动和（最终）决定）。我们发现，通常是研究人员扮演决策者的角色，而参与往往是按照他们的条件进行的。我们注意到患者和亲属通常扮演伴侣的角色，当他们被列为文章的共同作者时。这表明共同作者是他们在患者和公众参与活动期间的工作授权。我们发现耐心和相对训练，患者和亲属的性格和沟通技巧，信任,财务报销，和时间经常被提到是良好研究伙伴关系的推动者。
