Institute for Health Services and Health System Research, Center for Health Services Research, Faculty of Health Sciences Brandenburg, Brandenburg Medical School (Theodor Fontane), Immanuel Klinik Rüdersdorf, Rüdersdorf bei Berlin, Germany.
Institute of Public Health, Faculty of Medicine, University of Cologne, Cologne, Germany.
Z Evid Fortbild Qual Gesundhwes. 2024 Aug;188:26-34. doi: 10.1016/j.zefq.2024.06.003. Epub 2024 Jul 22.
Patient involvement (PI) in systematic reviews (SRs) can help to improve the quality of SRs and enhance the credibility of the research process. At the same time, PI in SRs poses challenges such as the need for extra time. While several organizations and working groups from English-speaking countries provide recommendations for PI in SRs, there is a lack of current insights from stakeholders in Germany, including researchers and patients. Eliciting their perspectives is indicated, as PI in SRs in Germany might differ due to language barriers and organizational dissimilarities. For sharing and discussing stakeholders' experiences in Germany, a workshop was facilitated. This paper summarizes the results of the workshop to elucidate stakeholders' perspectives on key aspects of PI in SRs in Germany.
A World Café was conducted at the 2023 conference of the Network for Evidence-based Medicine. Participants at all levels of experience could take part without prior registration. The data obtained was summarized narratively in an iterative process, and a framework of the topics discussed was developed.
22 participants, predominantly researchers, took part. Participants formulated several general conditions for PI in SRs such as time and transparency. The majority of the tasks described referred to the application phase and the initial phase of a SR. The development of training and information materials in plain German language was deemed essential. The application phase of an externally funded SR and patient recruitment were considered as particularly challenging.
Several of the formulated aspects such as time and transparency are consistent with earlier work. The project start of a SR, however, has so far not been explicitly described in the literature as being of particular importance. This phase might be even more crucial to SR projects in Germany since researchers are expected to develop information materials for patients. Both the application phase and patient recruitment could be considered particularly challenging due to a lower degree of organisation of PI in Germany.
World Café participants described many aspects referring to the project start of a SR. This underlines that PI in SRs needs to be described as a process. A process model intertwining the phases of a SR with the respective phases of PI, ideally including best practices for each phase, could be of great value. With respect to the specific context in Germany, a greater degree of organization of PI, i.e. coordinated by an institution, could help to manage challenges such as patient recruitment.
患者参与（PI）系统评价（SRs）可以帮助提高 SRs 的质量，并增强研究过程的可信度。同时，PI 在 SRs 中也带来了一些挑战，例如需要额外的时间。虽然来自英语国家的几个组织和工作组提供了关于 PI 在 SRs 中的建议，但德国的利益相关者（包括研究人员和患者）目前缺乏相关见解。因为 PI 在德国可能由于语言障碍和组织差异而有所不同，所以征求他们的观点是很有必要的。为了分享和讨论德国利益相关者的经验，我们组织了一次研讨会。本文总结了研讨会的结果，阐明了利益相关者对德国 SRs 中 PI 的关键方面的看法。
在 2023 年循证医学网络会议上进行了一次世界咖啡会议。所有经验水平的参与者都可以在没有事先注册的情况下参加。通过迭代过程，对获得的数据进行了叙述性总结，并制定了讨论主题的框架。
22 名参与者，主要是研究人员，参加了会议。参与者提出了 PI 在 SRs 中的一些一般条件，例如时间和透明度。描述的大多数任务都与应用阶段和 SR 的初始阶段有关。制定通俗易懂的德语培训和信息材料被认为是至关重要的。外部资助的 SR 的应用阶段和患者招募被认为是特别具有挑战性的。
所提出的一些方面，如时间和透明度，与早期的工作是一致的。然而，SR 的项目启动阶段在文献中还没有被明确描述为特别重要。由于研究人员需要为患者开发信息材料，因此该阶段对于德国的 SR 项目可能更为关键。由于德国 PI 的组织程度较低，因此应用阶段和患者招募都可以被认为是特别具有挑战性的。
世界咖啡会议参与者描述了许多与 SR 项目启动相关的方面。这强调了 PI 在 SRs 中需要被描述为一个过程。一个将 SR 阶段与 PI 阶段交织在一起的过程模型，理想情况下包括每个阶段的最佳实践，将具有极大的价值。鉴于德国的具体情况，PI 的更大程度的组织，即由一个机构协调，可以帮助管理患者招募等挑战。
