Karlsson Anne Wettergren, Kragh-Sørensen Anne, Børgesen Kirsten, Behrens Karsten Erik, Andersen Torben, Kidholm Maiken Langhoff, Rothmann Mette Juel, Ketelaar Marjolijn, Janssens Astrid
Department of Public Health, User Perspectives and Community-Based Interventions, University of Southern Denmark, Odense, Denmark.
Steno Diabetes Center Odense, Odense University Hospital, Odense, Denmark.
Res Involv Engagem. 2023 Jun 15;9(1):43. doi: 10.1186/s40900-023-00448-z.
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.
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.
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.
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.
近期研究表明，有必要调查健康研究中患者及公众参与和介入（PPIE）中的伙伴关系角色及动态，以及如何实现影响和成果。存在许多标签来描述参与过程，但尚不清楚这些标签是否会对伙伴关系和成果产生影响。本快速综述调查了同行评审论文中如何描述健康研究中各种PPIE活动中患者、亲属和研究人员之间的角色，并探讨了促成这些伙伴关系的因素。
快速回顾2012年至2022年2月发表的描述、评估或反思健康研究中PPIE经验的文章。所有研究学科和研究领域均符合条件。2021年11月至2022年2月期间检索了四个数据库（Medline、Embase、PsychInfo和CINAHL）。我们遵循PRISMA指南并提取描述性因素：年份、来源、研究领域和学科、研究重点、使用的框架和共同作者情况。在选定的文章中，我们使用斯米茨等人的参与矩阵对伙伴关系角色进行了叙事分析。最后，我们对报告的伙伴关系促成因素和成果进行了元综合分析。患者和亲属（PRs）参与了整个快速综述过程，并且是本文的共同作者。
纳入了来自不同研究学科和领域的70篇文章。选择了40篇文章对PRs和研究人员的角色描述进行叙事分析，并对促成因素和成果进行元综合分析。大多数文章将研究人员描述为整个研究周期中的决策者。PRs作为共同作者被纳入时最常成为伙伴；他们大多在设计、分析、撰写和传播阶段成为伙伴。伙伴关系的促成因素包括：PR培训、PRs的个性和沟通技巧、信任、报酬和时间。
研究人员的决策角色使他们能够控制在项目中何时何地纳入PRs。共同作者身份是认可患者贡献的一种方式，这可能会使他们的知识和伙伴关系合法化。作者描述了常见的促成因素，这有助于未来建立伙伴关系。
