Di Meo Anna-Francesca Jessica, Gökce Feyza, Pfeiffer Lisa, Teusen Clara, Gehrmann Jan, Jung-Sievers Caroline, Schneider Antonius, Gensichen Jochen, De Valerio Karolina, Pitschel-Walz Gabriele
Lehrstuhl für Public Health und Versorgungsforschung, Institut für medizinische Informationsverarbeitung, Biometrie und Epidemiologie, Medizinische Fakultät, Ludwig-Maximilians-Universität München, München, Germany.
Pettenkofer School of Public Health, München, Germany.
Gesundheitswesen. 2025 May;87(5):318-327. doi: 10.1055/a-2445-5498. Epub 2024 Oct 18.
Integration of the patient perspective in research projects is essential to strengthen the relevance and quality of research results. In order to rectify the lack of structured procedures for patient integration in German research projects, this study summarises the currently available knowledge in a simplified practice-oriented checklist for researchers.Through 13 semi-structured qualitative interviews conducted with members of a research group in December 2022, this study explored patient participation possibilities and barriers. The inductive-deductive coding and analysis in the software MAXQDA led to a standardized checklist development for seamless patient integration across similar contexts and research fields.Of 13 experts, nine researchers (69%) incorporated patient insights into their work, covering topics, concepts, focus prioritization, and study materials. Four researchers (31%) faced barriers due to the absence of guidelines. More than 90% recognized potential for patient integration in topic prioritization, concept formation, evaluation, result review, and interpretation. Researchers highlighted barriers such as patient's limited scientific basis, restricted access, and knowledge gaps in patient interaction. Among the respondents, 56% pointed to training needs and 44% to structural barriers such as workload, unclear funding, guidelines and stakeholder involvement. The resulting checklist includes six sub-categories, each with an average of four sub-items, which operationalise the integration process.Current research lacks effective patient inclusion processes due to inadequate access, tools, and knowledge. While immediate training can address some challenges, longer-term changes in policy and funding are necessary. With the new checklist, researchers receive a support tool to integrate the patient perspective in their projects in a systematic manner.
将患者视角纳入研究项目对于增强研究结果的相关性和质量至关重要。为了纠正德国研究项目中患者纳入缺乏结构化程序的问题,本研究为研究人员总结了当前可用的知识,并简化为一份以实践为导向的清单。通过2022年12月对一个研究小组的成员进行的13次半结构化定性访谈,本研究探索了患者参与的可能性和障碍。在MAXQDA软件中进行的归纳-演绎编码和分析,促成了一份标准化清单的制定,以便在类似背景和研究领域中无缝纳入患者。在13位专家中,9位研究人员(69%)将患者见解纳入其工作,涵盖主题、概念、重点优先级和研究材料。4位研究人员(31%)因缺乏指导方针而面临障碍。超过90%的人认识到在主题优先级确定、概念形成、评估、结果审查和解释方面患者纳入的潜力。研究人员强调了一些障碍,如患者科学基础有限、获取受限以及患者互动中的知识差距。在受访者中,56%指出了培训需求,44%指出了结构障碍,如工作量、资金不明、指导方针和利益相关者参与等问题。由此产生的清单包括六个子类别,每个子类别平均有四个子项,这些子项将纳入过程进行了操作化。由于获取途径、工具和知识不足,当前研究缺乏有效的患者纳入流程。虽然即时培训可以解决一些挑战,但政策和资金方面的长期变革是必要的。有了新的清单,研究人员获得了一个支持工具,以便将患者视角系统地纳入他们的项目。