Finderup Jeanette, Buur Louise Engelbrecht, Tscherning Sarah Cecilie, Jensen Annesofie Lunde, Kristensen Anne Wilhøft, Petersen Anne Poder, Toft Bente Skovsby, Rasmussen Gitte Susanne, Skovlund Pernille, Vedelø Tina Wang, Rodkjær Lotte Ørneborg
Department of Renal Medicine, Aarhus University Hospital, Palle Juul-Jensens Boulevard 99 Aarhus N, 8200, Aarhus, Denmark.
Department of Clinical Medicine, Aarhus University, Aarhus, Denmark.
Res Involv Engagem. 2022 Aug 26;8(1):43. doi: 10.1186/s40900-022-00378-2.
Although interest in Patient and Public Involvement in health-related research is growing, there seems to be a lack of guidance supporting researchers in deciding on methods and levels for Patient and Public Involvement in health-related research throughout the research process. Furthermore, the numerous definitions, methods, and frameworks make it challenging for researchers new to this field to decide on the most appropriate approach for their project.
This study aimed to develop and test guidance for researchers deciding on approaches, levels, and methods for engaging patient partners in health-related research. A group of 11 researchers in Patient and Public Involvement in health-related research participated in six workshops to develop the guidance. The feasibility and acceptability of the guidance were tested in a survey of 14 researchers using the System Usability Scale plus two elaborative questions. The guidance was also tested by five PhD students engaging patient partners in their projects.
The guidance developed consisted of two resources: Resource I outlined five international approaches to Patient and Public Involvement in health-related research, and Resource II described the different levels and methods for engaging patient partners in research. The System Usability Scale score (at the 50th percentile) was 80, indicating excellent usability. Qualitative data showed that the two resources supported reflections regarding different approaches, levels, and methods.
The researchers found the guidance to be supportive of their reflective thinking about engaging patient partners in their research. The testing provided knowledge about when and how to use the guidance but also raised questions about the usefulness of the guidance in communications with patients.
尽管患者和公众参与健康相关研究的关注度在不断提高，但在整个研究过程中，似乎缺乏指导来支持研究人员决定患者和公众参与健康相关研究的方法和程度。此外，众多的定义、方法和框架使得该领域的新手研究人员难以确定适合其项目的最佳方法。
本研究旨在为研究人员制定并测试有关确定让患者合作伙伴参与健康相关研究的方法、程度和方式的指导意见。11名参与健康相关研究中患者和公众参与的研究人员参加了六次研讨会以制定该指导意见。使用系统可用性量表及两个详细问题，对14名研究人员进行的调查测试了该指导意见的可行性和可接受性。五名在其项目中让患者合作伙伴参与的博士生也对该指导意见进行了测试。
制定的指导意见包括两份资源：资源一概述了患者和公众参与健康相关研究的五种国际方法，资源二描述了让患者合作伙伴参与研究的不同程度和方法。系统可用性量表得分（第50百分位数）为80，表明可用性极佳。定性数据显示，这两份资源有助于对不同方法、程度和方式进行思考。
研究人员发现该指导意见有助于他们对让患者合作伙伴参与研究进行反思性思考。测试提供了有关何时以及如何使用该指导意见的知识，但也引发了关于该指导意见在与患者沟通中的有用性的问题。
